Rehabilitation after stroke

S/ O N U n ỵ ve r s i t y of Appl i e d S ciences REHABILITATION AFTER STROKE An explorative research about rehabilitation for cerebral vascular accident patients in the community Course: Master of Advanced Nursing Practice Period: 2009 -2010 _ TPƯỊNỌ ĐRĐlẾU DÜƯNG • k Xm DIRK T ĩt ự V ĩÊ ìĩ S j M aster student: Le Xuan Thang Tutor: Prof Dr.Joy N otier Supervisor: Dr Nguyen Minh Tuan Nam Dinh, 6-2010 Le X u an Thang ABSTRACT Aim: The purpose of this research was to explore cerebral vascular accident (CVA) patient’s perceptions of physical, psychology, social and economic needs in order to improve the community rehabilitation process The findings from international research have been used to provide a material that can be adapted for improving the quality of care and rehabilitation for CVA patients in the community in Vietnam Background: Cerebral vascular accident is the third leading cause of death and the most common cause of disability among adults many countries According to the most recent Vietnamese survey in three different regions in the South of Vietnam including Ho Chi Minh City, Tien Giang and Kien Giang provinces, CVA prevalence was 6.08 per 1.000 inhabitants, and prevalence increased with age (Le, Nguyen & Pham, 1999) Also, in Vietnam, the mortality from CVA’s is very high and if patients survive they have a wide range of serious complications including: loss of mobility, pain, hard of understanding and talking, or other strange sensations (Chuong & Nghien, 1996) This reduces quality of life and creates a burden for family and society In Nam Dinh general hospital most CVA patients spend about two weeks in the rehabilitation department, after that, they are discharged and continue rehabilitation at home However, there Is a problem; to date the department has no evidence on how effective home rehabilitation is for CVA patients Indeed, generally in Vietnam and particularly in Nam Dinh province, there is little available research regarding the advantages and disadvantages of community rehabilitation for CVA patients For this reason, this research was carried out with the purpose of exploring CVA patients’ perceptions of rehabilitation in the community in Vietnam Research statement: An exploration of CVA patients’ perceptions of physical, psychological, social and economic needs in order to improve the community rehabilitation process Method: The research design is based around the first cycle of action research (Tripp 2003) for an exploratory study that uses standardized open-ended interviews to explore the views of CVA patients’ perceptions 20 CVA participants were recruitedfrom the Nam Dinh City, Vietnam and interviewed Study results: The findings from the data were analysed using a process which developed themes which were compared to the literature Both advantages and disadvantages to receiving therapy in the community setting emerged during analysis The findings also highlight the need for nurses and physiotherapists to be aware of the impact of the therapy setting on the patient A framework has been developed and is recommended as a way to incorporate the benefits of home settings but this is new and will need further investigation and evaluation Conclusions: Although rehabilitation in the community is still limited it is increasingly becoming the new way for rehabilitation It appears to translate motor and functional gains that occur through natural recovery and rehabilitation into a greater degree of higher-level function and satisfaction with community reintegration These in turn translated into a better physical health In addition to the patient benefits, this framework is cost-effective.and Important Issue If srvices are to be maintained and expanded Le Xuan Thang CONTENT A B S TR A C T I INTRODUCTION II LITERATURE R E V IE W III M ETH O D O LO G Y 3.1 Study d e sig n 3.2 Study area 10 3.3 Study population 10 3.4 Data co lle ctio n 11 3.5 Data a n a lysis 11 3.6 Methodological q u a lity 12 3.6.1 Validity 12 3.6.2 R eliability 13 3.7 Ethical consideration 13 IV R ESULTS 14 4.1 General characteristics of cerebral vascular accident pa tien ts .14 4.2 The effect of rehabilitation at home to cerebral vascular accident patients 16 4.2.1 The effect o f rehabilitation at home to health status 16 4.2.2 The effect o f rehabilitation at home to economic 19 4.2.3 The effect o f rehabilitation at home to psychology 21 4.2.4 The effect o f rehabilitation at home to social integration .22 V DISCUSSION 23 5.1 Discuss on characteristic of cerebral vascular accident p a tie n ts 23 5.2 The effect of rehabilitation at home to cerebral vascular accident patients24 5.2.1 The effect o f rehabilitation at home to patient health s ta tu s 24 5.2.2 The effect o f rehabilitation at home to econom ic 27 5.2.3 The effect o f rehabilitation at home to p sychology .28 5.2.4 The effect o f rehabilitation at home to social inte gra tio n .29 VI C O N CLU SIO NS 31 6.1 Several general characteristics of study participants 31 6.2 The effect of rehabilitation at home to cerebral vascular accident patient 31 6.2.1 A d va ntages 31 6.2.2 Disadvantages 32 VII RECOMMENDATIONS 32 “Rehabilitation programme for cerebral vascular accident (CVA) patients in the community” 33 VIII ACKNOW LEDGEM ENTS 33 VIII BIBLIOGRAPHY 33 X APPENDICES 40 Appendix 1: Interview g u ide .40 Appendix 2: Informed c o n se n t 42 Appendix 3: Permission letter o f Nam Dinh Medical O ffice 44 Appendix 4: Timetable o f the re se arch 45 Le Xuan Thang II LITERATURE REVIEW For this study a wide range of resources were used, to identify international and Vietnamese sources of research regarding CVAs The search included CVA patients perceptions when receiving rehabilitation at home, the advantages and disadvantages of rehabilitation for CVA patients at home, and CVA rehabilitation after discharge from hospital The used of advanced search techniques revealed articles from 1991 to 2009 of which almost all were in English with a limited number from Vietnam, the most important of these was the summary record of research published by the Vietnam Rehabilitation Association (VRA) Cerebral vascular accident (CVA) is the sudden death of a portion of the brain cells due to a lack of oxygen A CVA occurs when blood flow to the brain is damaged resulting in abnormal function of brain, and is caused by a blockage or rupture of an artery to the brain, in lay terms a CVA is oftern referred to as a stroke (O'Sullivan & Schmitz, 2006,) Although can happen in every age, they are most common in people over 60 years old, therefore as populations age, the incidence is increasing in all countries over the world CVA (Morris & Schroeder, 2005) As a result of the physiological effects, specific impairments may occur when a particular area of the cerebrum is damaged, these vary according to the side of the brain affected: The effects of a right sided CVA may include left-sided weakness (left hemiparesis) or paralysis (left hemiplegia) and sensory impairment, visual problems, including an inability to see in the left visual field of each eye (homonymous hemianopsia), spatial problems with depth perception or directions up/down and front/back, memory problems, lack of concern about situations, impulsivity, inappropriateness, and depression (University of Virginia, 2004) The effects of a left sided CVA may include: right-sided weakness (right hemiparesis) or paralysis (right hemiplegia) and sensory impairment, problems with speech and understanding language (aphasia), visual problems, including the inability to see the right visual field of each eye (homonymous hemianopsia), impaired ability to read, write, and leam new information, memory problems (University of Virginia, 2004) The goals of every treatment method for cerebral vascular accident are not only to save the patients but also to recover the functions which were damaged The aim of rehabilitation is to help patients increase their independence as much as possible in their daily life, and to support their reintegration into society (Hill et al, 2005) For this reason, community based rehabilitation (CBR) is becoming more important for the rehabilitation Le Xuan Thang field as a whole and particularly for cerebral vascular accident patient (Chuong, Nghien, Chau & Hanh, 1999; Hale, Bennett, Bentley, Crawshaw, & Davis, 2002) CBR focuses on enhancing the quality of life for people with disabilities and their families, through helping them meet basic needs and ensuring their inclusion and participation in planning care as well as the treatment cycle itself CBR is a multi-sectoral approach and has five major components: health, education, livelihood, social life and empowerment CBR was developed in the 1980s, to give people with disabilities access to rehabilitation in their own communities using predominantly local resources In 2004 the International Labour Organization (ILO), UNESCO and WHO paper repositioned CBR as a strategy for rehabilitation, equalization of opportunity, poverty reduction and social inclusion of people with disabilities (WHO, 1994) CBR in Vietnam has been deployed since 1987 and there has always been interest and supply concrete guidance from Vietnamese Ministry of Health (MOH) Since that time many rehabilitation/nursing hospitals, rehabilitation centers, rehabilitation and physiotherapy department in hospitals have been built with considerable numbers of medical staff specially trained to work in translating rehabilitation skills to community care (Xuyen, et al, 2008) Patients’ perceptions Patients’ perceptions are multi - dimensional, with considerable agreement concerning the framework for defining these broad domains, they include aspects of physical health, and economic, psychological and social functioning (Hale, Bennett,, Bentley, , Crawshaw,, & Davis, 2002; Hale, 2004; Australian National Health and Medical Research Council, 2005; Chaiyawat, et al, 2009; Koch et al, 2000; Royal college of physicians of London, 2004) In general, people with CVAs often cope well with the challenges arising from their disease and they are day to day exerting themselves to practice exercises with the purpose of gaining mobility, speech/ language, occupation and social interactions In recent study articles from Canada, Australia, Sweden, England, Netherlands countries where CBR was first developed, programmes showed that there were many serious after-effects of CVA patient which increase the burdens of life for patients themselves, their family and next-of-skin (The Canadian Stroke Strategy, 2006; Ekstam, 2009, Ngan, & Stretton, 2006, Bjorkdahl, 2007; Australian National Health and Medical Research Council, 2005) In addition, it also leads to the costs of long-term medical treatment, the costs from the rehabilitation itself and support in care (Anderson et al 2000; Bjorkdahl, 2007; Holmqvist, et al, 2000; Australian national health and Medical research council, Le Xuan Thang 2007) These patients also have poorer psychosocial adjustment to illness, higher levels of depression, and more dissatisfaction with their personal lives For families, the psychosocial issues arising from living with a hemiplegic are often heavy; and these have considerable influence on the results of rehabilitation (Anderson, Rubenach, Mhurchu, , Clark, Spencer, Winsor, & Fafrm, 2000; Australian National Health and Medical Research Council, 2005; Koch, Wottrich, & Holmqvist, 1998) Conclusion It is evident from these studies that ways to maximize the effectiveness of community rehabilitation need to be found, and the first step in this process has to be to explore with the patients themselves their perceptions of the servioces that they currently receive, which aspects work well and how the process overall could be improved to meet their needs Le Xuan Thang III METHODOLOGY To meet the aims of this study, a process needed to be used that not only identified the rehabilitation needs of patients but following that developed ways to act on the findings to improve the community rehabilitation process It was not seen as ethical to explore perceptions and then make no suggestions to act on the information given Traditional methods of research such as experimental design whilst providing ways assess the results of new approaches are led by professionals and based on cause and effect, and this limits the extent to which participants are involved in developing or influencing the changes However, t is recognized that compliance is much higher when patients understand exactly what procedures they need to follow, and for successful rehabilitation compliance is essential Therefore this approach was rejected and an approach sought that enabled patients to participate in the planning of the proposed improvements This would have the added advantage that suggestions would then be made in a manner that fitted within the context in which the patients lived The most appropriate approach to developing and implementing the changes needed appeared to be through action research This is a cyclic process which identifies issues where change is neede.d then working with those involved in delivering or receiving services, develops possible changes, implements these, then monitors and reviews the outcomes of these changes in practice, restarting the cycle and making further changes where necessary (Ferrance, 2000; Smith, 2007) It is evident that this process is ongoing and longterm, with each cycle following the same processes and refining the product delivered Therefore, this study can focus only on the first cycle of the process, for clarity the activities needed to complete this cycle are summarized in the table below: No Task Literature review on needs of cerebral vascular accident (CVA) patients in the community Methods Using internet database machine and library: Pubmed, Medline, sciencedirect, Cochrane and Goodgleweb Limited year 1991 onwards Keywords: CVA patients’ perceptions when getting rehabilitation at home, advantages and disadvantages when rehabilitation for CVA patients at home, CVA rehabilitation after discharge from hospital Identify a method to gain patients’perceptions recognizing the most important things that the findings from research can be used to provide Discuss with colleagues, expert of physiotherapy in Saxion university, supervisor about rehabilitation needs for CVA patient in the community Reach agreement regarding method to be used Interviews seen as most Le Xuan Thang a material for improve quality of care and rehabilitation for CVA patient in the community in Vietnam Make the data collection tool following four issues: physical health, economic, psychology and social interaction appropriate questions using structured open ended Synthesize and analyze data collection follow four themes: physical health, economic, psychology and social interaction Refine the advantages and disadvantages of CVA patients when they were carried on rehabilitation at home through peer-review and expert Based on interview results develop a programme to improve the advantages and cut down disadvantages of rehabilitation for CVA patients in the community in Vietnam Communicate and publish this research Transcribe and analysis data Get support from Dutch tutor and Vietnamese supervisor Discuss with colleagues, expert of physiotherapy in Saxion university, supervisor about rehabilitation needs for CVA patient in the community Reach agreement regarding questions to ask Data collection through Explorative research is used toidentify key interviews of 20 CVA patients at issues regarding uality of care and rehabilitation for CVA patients in the community in Vietnam their home Translate draft version into Vietnamese, then delivery these results to supervisors to get feedback Write down in English then translate into Vietnamese version Vietnamese Nursing Journal and others one 3.1 Study process Following completion of the literature study, the next step was to explore the CVA patients perceptions of physical, psychology, social and economic needs to improve the community rehabilitation process Consequently, after analyzing and choosing in variety of research paradigms, the most suitable approach for this step was interviewing However, the open ended interviews used in qualitativwe research may not have covered all aspects of rehabilitation therefore although interviews were used, the process needed to be nearer to the positivist paradigm where more standardized information could be collected Therefore a so called standardized open-ended interview was seen as the most appropriate strategy for this study, and an interview quide developed with set questions to be asked to all participants (Patton 2002) In structured interviews, the same questions are asked the same order for all individuals I Le Xuan Thang arrangement of the respondent number on each page and the page number for each transcript and other advice on typing transcripts was noticed at this phase The Second step was to attach any post interview notes, the idea jottings from the first reading through and the summary from the second careful reading was carried, these were seen as possible emerging themes The third step was to start a separate file for each of these emerging themes Then, in step four brainstorming regarding what the data in the folder was saying, used mind maps for clarify This enabled links between the various aspects of the theme to be explored Finally, in the step five, the description emerged of the CVA patients’ perceptions of physical, psychology, social and economic needs to improve rehabilitation in the community based on each theme, using quotes to illustrate the arguments Developing a programme/framework for rehabilitation in the community 3.6 Methodological quality 3.6.1 Validity Validity is the degree to which an instrument measures what it is supposed to be measuring (Polit & Beck, 2006) Based on content of validity, there are many ways to increase the degree of validity, for instance: literature review, identification of items for inclusion in instrument design, personal reflection, identification of concepts, piloting, comparison of pilot data with identified concept and literature,\The interview guide was created based on study articles that related to CVA patients’ needs In addition, questionnaire contained a section regarding the three major components of CBR programme: Health: promotion, prevention, medical care (physical and psychology health), rehabilitation and assistive devices Livelihood: skills development, self-employment, financial, waged employment and social protection Social: relationships, marriage and family, personal assistance, culture and arts, recreation, leisure and sports and access to justice These three categories are applied in this study This evidence based activity will help to increase the content validity of the instrument 12 Le Xuan Thang After that, under instruction of making truly open-ended question for each category from Patton (2002) relevant open-ended questions were developed to gain insight into the stories of the respondents The finished interview guide was discussed with my supervisor and CVA expert from Physiotherapy department at Saxion University for improving words, meaning and appropriate in Vietnamese context for promote the face validity The interview guide was piloted with one CVA patient who could satisfy follow four criteria and carry out pilot questionnaire to check if patient understand the questions This activity will also help to increase the content validity (Notter, 2009) After that, a comparison wwa made of pilot data with identified concept and literature mentioned in background 3.6.2 Reliability Reliability is defined as the degree of consistency or dependability with which an instrument measures the attribute it is designed to measure It addresses how accurate the research methods and techniques produce data (Notter J, 2009; Polit & Beck, 2006) Collecting data, transcription the audio, interpreting the recorded data conducted by the same researcher also helped to improve the reliability 3.7 Ethical consideration Approval was sought from Nam Dinh Medical office, Scientific Research Commission of Nam Dinh University of Nursing The consent was formalized through a written agreement identifying the boundaries and extent of the permission to interview people There was also get consent for audio recording of participants The research CVA patients’ perceptions of rehabilitation at home was carried out based on four guidelines (Christians, 2005) Firstly, informed consent from subjects who must voluntarily agree to participate based on full and open information Secondly, a basic moral principle is that deception and misrepresentation are no longer credible means to extract information from participants Thirdly, privacy and confidentiality needs to be respected, however, privacy protection can be meaningless if “there is no consensus or unanimity on what is public and private" (Christians, 2005) Next, there needs to be an assurance that data is accurate without fabrications, fraudulent materials and omissions 13 The important role of multidisciplinary team in health care was also demonstrated clearly through this research It was necessary to create close cooperation among different professional health care members The patients needed a holistic health care service in which the physicians gave treatment, the nurses provided caring, the nutritionists established appropriate nutritional regime or the physical therapists instructed the patients about respiratory exercises RECOMMENDATION Through the findings from this research, there should be a training program for nurses of caring COPD patients in particular and those who have chronic diseases, both physical and mental health The nurse should be notified about the patients' progress of changing psychology and the influence of disease on their mental health The nurses will also be trained to perform complete general assessment during caring especially the skills of identifying patient’s psychological condition Timely decision or interventions from nurses might help the patient overcome the difficulties so they can change their behavior from negative to positive It will be necessary to apply the health educational program especially the health promotion to gain the patients’ compliance of treating The COPD booklet and brochures that were made as products after research are the first instruments for COPD patients in applying the health educational program There also should be a training program for relatives of caring COPD patients at home This program will instruct the relatives right ways of caring patients It can also support the relatives to prepare their psychology so that they can control their motion when facing with the stress and pressure in caring patients This program will help not only the relatives to protect themselves from harm but also the patients to prevent psychological injuries Beside that, it is also necessary to establish a training course for the health care centers or social associations in supporting COPD outpatients The training program can improve the competency and function of the health care centers in treating, caring and managing COPD outpatients When the competency of health care centers is increased, the number of patients who come to center hospital like Cho Ray will reduce This will improve the quality of health care service as well as save lot of time and money for patients, government and society Moreover, when the role of social associations in supporting outpatients is upgraded, the more support the patients will receive It is necessary to have more experimental quantitative researches for application of health educational program This research is just the first step when exploring the influences of COPD on patient’s quality of life and their requirement to health care services From the findings of this research, many products will be finished to improve the quality of nursing care especially the health educational program or some training programs that are recommended All the products must be checked and evaluated before being popularized to the patients Thus, there should be another experimental quantitative research to apply the products on the real context and evaluate their effect to the health care profession 32 CONCLUSION COPD influenced on all the respects of patient’s quality of life Patient’s physical health was reduced when they had to suffer the dyspnea, tire of exertion or having frequent exacerbation Beside that, the patients had negative reaction and motion when most of them wanted to die because they felt so tired and hopeless during treating This was also because the patient had thinking of being a burden when they had to depend almost totally on their relatives Although all of the patients told that their family relationship was not influenced, there was potential problem in family members’ behavior in caring patients According to working relationship, little impact was found After all, the patients rarely believed in the Gods or Buddha’s power as their moral support Most of the interviewed patients lacked of basic related information but only few patients required the provision of information and instruction while it was enough for the others They also need supporting from their relatives, the health care members, hospitals, medical and social associations Thus, the basic related information should be designed and performed in easy for patient’s approaching to help the patients have clear understanding about their condition, disease, treatment progress and to avoid being harmed of psychology Moreover, there should be training courses to improve the role and function of these factors to provide good quality care and support for patients 33 A P P E N D IX A: INTERVIEWING GUIDE DEMOGRAPHIC DATA: Code number: Age: Gender: Employment: Characteristics of living place: Smoking: bag(s)/day; .years First diagnosis of COPD: FEV1/FVC: COPD exacerbation: COPD treatment received: Historical disease: Complications: INTERVIEWING DATA: Domain Patient’s theme Interviewing questions Physical health Patient’s status What kind of physical problem you experience since you have COPD? What is your discomfort when living with COPD? How is your sleep and rest when having COPD? Psychological Patient’s feeling How you feel when you have to deal living with COPD? How is your memory and concentration when having COPD? How did you feel when they told you having COPD? Level of independence Patient’s What are your difficulties in doing activities of daily independence living? What are your discomfort (side effect) of using the long- 34 term treatment for COPD? How is your work since having COPD? Social relationships Patient’s relationship Has COPD affected your personal relationships? This is a sensitive question related to your sexual life so you can reject answer? How is your sexual life when having COPD (if yes)? Environment Patient’s home and support Do you have any social support? What you think about the social support you received for treating COPD? What you think about your financial resources since you have COPD? What health care you have? How is your living environment? Do you have any difficulties with transport? What are your problem in participating in entertaining? What information did you receive? What you think about that information? Which information you need more? Is there anything to support your treatment at home? Spirituality/ Religion/ How is your personal belief since having COPD? Personal beliefs • Are there any impacts of COPD on your life you want to tell me more? • Do you have any needs want to tell me more? 35 A P P E N D IX B: INFORMED CONSENT Date: Name of participant: Number code of participant: Study: A STUDY EXPLORING COPD PATIENTS’ NEEDS IN ORDER TO DEVELOP APPROPRIATE HEALTH EDUCATION PROGRAM Researchers: Huynh Thuy Phuong Hong Purpose of the research: The aim of this study is to explore the impacts of COPD on patients’ quality of life and their needs of health care services The results of this study will help to develop an appropriate health education program for COPD patients in order to improve quality of nursing care What you will be asked to in the research: The interviewee will be asked 20 open-ended questions classified in domains: physical health, psychological, level of independence, social relationships, environment and personal belief The time for each of interview is 45 minutes Risks and discomforts: We not foresee any risks or discomfort from your participation in this research You have the right to reject to answer any questions when you not want Your private personal information which make you be discovered will be kept secret The interview will happen in a private room that guarantee your privacy and comfort Benefits of the research and benefits to you: The interviewee will be provided a thorough explanation of the study The interviewee can contact researcher by email (huvnhthiphuonqhonq@vahoo.com) or telephone number (0908733650) to order a copy of any manuscripts based on the research (or summaries of study’s results) After the interview, the participants will receive small gifts as thank you from researcher Voluntary participation: Your participation in the study is completely voluntary and you may choose to stop participating at any time Your decision not to volunteer will not influence your relationship with researcher either now, or in the future Withdrawal from the study: You can stop participating in the study at any time, for any reason, if you so decide Your decision to stop participating, or to refuse to answer particular questions, will not affect your relationship with the researcher Confidentiality: Your participation in this study will remain confidential, and your identity will not be stored with your data Your responses will be assigned a code number, and the list connecting your name with this number will be kept in a locked room Your participation in this study will remain confidential and there will be no link between your responses and your identity 36 Questions about the research: If you have questions about the research in general or about your role In the study, please feel free to contact with researcher by e-mail (huvnhthiphuonqhonq@vahoo.corrO or by telephone (0908733650) This research has been reviewed and approved by the Saxion University of Applied of sciences - the Netherlands, Cho Ray Hospital - Vietnam Legal rights and signatures: I, consent to participate in a study exploring COPD patients’ needs in order to develop appropriate health education program conducted by Ms Huynh Thuy Phuong Hong I have understood the nature of the project and agree to participate I am not waiving any of my legal rights by signing this form My signature below indicates my consent S ig n a tu re Date _ Participant S ig n a tu re _ _ Date Principal investigateur 37 INFORMED CONSENT I voluntarily agree to participate in the interview regarding to exploring COPD patients’ needs I understand that this research is being conducted by Ms Huynh Thuy Phuong Hong, ANP master student in Saxion University of applied sciences in the Netherlands, to develop a suitable health education program and is also the basis of her master thesis report I understand that the interviews which may involve me are: The impacts of COPD on my quality of life My needs of health care services and information I grant permission for the interview to be tape recorded and transcribed, and to be used only by Ms Huynh Thuy Phuong Hong for analysis of interview data I grant permission for the interview data generated from the above methods to be published in an evaluable report to the funder, and in the thesis report and future publication(s) I understand that any identifiable information in regard to my name and/or agency name may be listed only in the above-mentioned evaluation report to the funder, that is, this information will not be listed in the thesis report or any future publication(s) Research Participant Date 38 A PPENDIX C: MODE OF INDUCTION SOURCE OF EFFICACY INFORMATION Participant modeling Performance desensitization Performance accomplishment Performance exposure Self-instructed performance Live modeling Vicarious experiences Symbolic modeling Suggestion Determinants of expected outcomes using self-efficacy perception A PP E N D IX D: MEASURING QUALITY OF LIFE THE W ORLD HEALTH ORGANIZATION QUALITY OF LIFE INSTRUMENTS (THE WHOQOL-100 AND THE WHOQOL-BREF) Introducing the WHOQOL instruments The Constitution of the World Health Organization (WHO) defines health as "A state of complete physical, mental, and social well-being not merely the absence of disease It follows that the measurement of health and the effects of health care must include not only an indication of changes in the frequency and severity of diseases but also an estimation of well being and this can be assessed by measuring the improvement in the quality of life related to health care Although there are generally satisfactory ways of measuring the frequency and severity of diseases this is not the case in so far as the measurement of well being and quality of life are concerned WHO, with the aid of 15 collaborating centers around the world, has therefore developed two instruments for measuring quality of life (the WHOQOL-100 and the WHOQOLBREF), that can be used in a variety of cultural settings whilst allowing the results from different populations and countries to be compared These instruments have many uses, including use in medical practice, research, audit, and in policy making WHO defines Quality of Life as individual perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment Strengths of the WHOQOL instruments The W HOQOL instrum ents were developed cross-culturally The WHOQOL-100 was developed simultaneously in 15 field centers around the world The important aspects of quality of life and ways of asking about quality of life were drafted on the basis of statements made by patients with a range of diseases, by well people and by health professionals in a variety of cultures The instrument was rigorously tested to assess its validity and reliability in each of the field centers and is currently being tested to assess responsiveness to change The WHOQOL-BREF, an abbreviated 26 item version of the WHOQOL-100, was developed using data from the field-trial version of the WHOQOL-100 The WHOQOL instruments can be used in particular cultural settings, but at the same time results are comparable across cultures The WHOQOL is now available in over 20 different languages and its development in WHOQOL MEASURING QUALITY OF LIFE > further languages is progressing The W HOQOL instrum ents place prim ary im portance on the perception o f the individual Most assessments in medicine are obtained by examinations by health workers and laboratory tests The WHOQOL instruments, by focusing on individuals' own views of their well being, provide a new perspective on disease For example, that diabetes involves poor body regulation of blood 40 glucose is well understood, but the effect of the illness on the perception that individuals have of their social relationships, working capacity, and financial status has received little systematic attention The WHOQOL instruments are tools that will enable this type of research to be carried out They not only inquire about the functioning of people with diabetes, across a range of areas but also how satisfied the patients are with their functioning and with effects of treatment Systematic developm ent o f the W HOQOL-100 The method used to develop the WHOQOL-100 involved considerable research and checking over several years to ensure that it accurately measures the issues that are important to a person's quality of life, and that it does so reliably The institutions which participated in this research now serve as reference centers and can provide technical support to users in their cultural setting (see later section for contact information) In return for this support, centers request a copy of data collected to be sent to them The Instruments have different form s for different uses The core WHOQOL instruments can assess quality of life in a variety of situations and population groups In addition, modules are being developed to allow more detailed assessments of specific populations (e.g cancer patients, refugees, the elderly and those with certain diseases, such as HIV/AIDS Administration of the WHOQOL instruments The national versions o f the W HOQOL The WHOQOL instruments are available in over 20 different languages The appropriate language version, and permission for using it, can be obtained from the appropriate national centre, as listed on pages 7-8 Centers may request a copy of data collected for collation in a national data set A methodology has been developed for new centers wishing to develop further language versions of the WHOQOL-100 or the WHOQOL-BREF This information can be obtained from The WHOQOL Group, Program on Mental Health, World Health Organization, CH-1211, Geneva 27, Switzerland The WHOQOL-BREF is self-administered if respondents have sufficient ability: otherwise, interviewer-assisted or interview-administered forms should be used Scoring the W HOQOL instrum ents The WHOQOL-100 produces scores relating to particular facets of quality of life (e.g positive feelings, social support, financial resources), scores relating to larger domains (e.g physical, psychological, social relationships) and a score relating to overall quality of life and general health The WHOQOL-BREF produces domain scores, but not individual facet scores Details on scoring are included in manuals available from The WHOQOL Group, Program on Mental Health, World Health Organization, CH-1211 Geneva 27, Switzerland Syntax files for checking and cleaning data, and for computing facet and domain scores are also available from The WHOQOL Group Psychom etric properties o f the W H O Q O L instrum ents Both the WHOQOL-100 and the WHOQOLBREF have been shown to display good discriminate validity, content validity and test-retest reliability Their sensitivity to WHOQOL - MEASURING 41 QUALITY OF LIFE > change is currently being assessed Domain scores produced by the WHOQOL-BREF have been shown to correlate at around 0.9 with the WHOQOL-100 domain scores The Uses of the WHOQOL instruments In m edical practice In clinical practice the WHOQOL instruments may be used with other forms of assessment, giving valuable information that can indicate areas in which a person is most affected and help the practitioner in making the best choices in patient care In addition they may be used to measure change in quality of life over the course of treatment Im proving the doctor-patient relationship By increasing the physician's understanding of how disease affects a patient's quality of life, the interaction between patient and doctor will change and improve This gives more meaning and fulfillment to the work of the doctor and leads to the patient being provided with more comprehensive health care Because a more complete form of assessment covering different aspects of patients' functioning is being carried out, patients themselves may find their health care more meaningful In assessing the effectiveness and relative m erits o f different treatments The WHOQOL instruments can form a part of the evaluation of treatments For example, chemotherapy for cancer may prolong a person's life, but may only so at considerable cost to their quality of life By using the WHOQOL instruments to look at changes in the person’s well being over the course of treatment, a much fuller picture can be gained In health sen/ices evaluation In the periodic review of the completeness and quality of medical services, the patients’ concerns are of importance The instruments provide an invaluable supplementary appraisal of health care services, by yielding a measure of the relationship between the health care service and patients' quality of life, and also by directly presenting a measure of patients' perception of the quality and availability of health care In research The WHOQOL instruments provide new insights into the nature of disease by assessing how disease impairs the subjective well being of a person across a whole range of areas In p o licy m aking When health providers implement new policies it is important that the effect of policy changes on the quality of life of people in contact with health services is evaluated The WHOQOL instruments allow such monitoring of policy changes The Structure of the WHOQOL-100 The structure of the WHOQOL-100 reflects the issues that a group of scientific experts as well as lay people in each of the field centers felt were important to quality of life The six broad domains of quality of life, and the twenty-four facets covered within each domain are shown below Four items are included for each facet, as well as four general items covering subjective overall QOL and health, producing a total of 100 items in the assessment All items are rated on a five point 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