Faith Martin

Twelve years' experience with the Patient Generated Index (PGI) of quality of life:A graded structured review

The Patient Generated Index (PGI) is an individualised quality of life (QoL) measure that has been in use since 1994. Various adaptations have been made to suit a variety of client groups. The PGI’s psychometric properties have been studied but their review is necessary to inform instrument choice. This article provides a structured review, using grading criteria adapted from those developed to aid outcome measure selection for use with older people. These criteria grade quality of evidence and strength of findings for psychometric validity, providing a useful model for future reviews. All published articles providing data addressing validity, reliability and/or responsiveness were included in the review. Eighteen relevant articles were identified and analysed using the grading criteria. Variable results and quality of investigation were seen. Generally the measure was found to be adequately reliable for group comparisons. The PGI appeared valid but evidence for responsiveness was unclear. Those versions of the measure using fewer points in their Likert scales may have higher reliability. Cognitions involved in QoL judgements remain little understood and investigations of psychometric properties may be enhanced by examination of appraisal processes.

Perceived barriers to self-management for people with dementia in the early stages

People with dementia in the early stages currently experience a care gap, which self-management may address. We explore perceived barriers to self-management. Using a systematic approach (logic mapping), 19 participants (people with dementia, carers, health care professionals and charity representatives) described self-management barriers facing people living with dementia. Thematic content analysis revealed six main themes: the lived experience of dementia, diagnosis, role of carer/family, impact of health care professionals, organisation of health services and societal views. People with dementia were seen as passive recipients of care, unable to self-manage owing to the impact of dementia on cognitive abilities. The need for interventions that are largely emotion focused, encourage activity maintenance and improve quality of life are described. Barriers to self-management exist at multiple levels, suggesting a whole-systems approach is required.

Perceptions of quality of life among Ugandan patients living with HIV: a qualitative study

BackgroundUgandans have endured the HIV epidemic for three decades. Now, with the availability of antiretroviral therapy (ART) and early diagnosis, those living with HIV can live longer and can enjoy the same life expectancy as the rest of the Ugandan population. This emerging trend necessitates the assessment of quality of life, alongside other patient outcomes, of those undergoing therapy, alongside other patient outcomes. While major strides have been made in developing measures of quality of life in the developed world, there remains a paucity of evidence from resource-limited settings. This challenge is further complicated by the contentious definition of quality of life, which is highly subjective and varies between individuals. In this paper, we aim to identify the determinants of quality of life for people living with HIV in a Ugandan context to contribute to the chronic care model for persons living with HIV/AIDS.MethodsTwenty HIV-positive participants took part in in-depth interviews at an urban clinic, with follow-ups at three and six months. Ten patients were on ART and ten not on ART. All interviews were transcribed and translated for analysis. Data were analysed manually using the framework approach to content analysis.ResultsIndividuals reported on four aspects of quality of life: liveability of the environment, utility of life, life ability of a person and appreciation of life. Respondents described multiple expectations and expressed hope for their future. However, many still suffered from stigma, fears of disclosure and poverty, which negatively affected their quality of life.ConclusionsIndividuals living with HIV receiving treatment or in care experienced an improved quality of life in this setting, although the situation for many remains precarious.

Factors That Affect Quality of Life among People Living with HIV Attending an Urban Clinic in Uganda: A Cohort Study.

Introduction With the availability of antiretroviral therapy (ART) and primary general care for people living with HIV (PLHIV) in resource limited settings, PLHIV are living longer, and HIV has been transformed into a chronic illness. People are diagnosed and started on treatment when they are relatively well. Although ART results in clinical improvement, the ultimate goal of treatment is full physical functioning and general well-being, with a focus on quality of life rather than clinical outcomes. However, there has been little research on the relationship of specific factors to quality of life in PLHIV. The objective of this study was to investigate factors associated with quality of life among PLHIV in Uganda receiving basic care and those on ART. Methods We enrolled 1274 patients attending an HIV outpatient clinic into a prospective cohort study. Of these, 640 received ART. All were followed up at 3 and 6 months. Health related quality of life was assessed with the MOS-HIV Health Survey and the Global Person Generated Index (GPGI). Multivariate linear regression and logistic regression with generalized estimating equations were used to examine the relationship of social behavioral and disease factors with Physical Health Summary (PHS) score, Mental Health Summary (MHS) score, and GPGI. Results Among PLHIV receiving basic care, PHS was associated with: sex (p=0.045) - females had lower PHS; age in years at enrollment (p=0.0001) - older patients had lower PHS; and depression (p<0.001) - depressed patients had lower PHS. MHS was only associated with opportunistic infection (p=0.01) - presence of an opportunistic infection was associated with lower MHS. For the GPG the associated variables were age (p=0.03) - older patients had lower GPGI; education (p=0.01) – higher education associated with higher GPGI; and depression - patients with depression had a lower GPGI (p<0.001). Among patients on ART, PHS was associated with: study visit (p=0.01), with increase in time there was better PHS, and this also improved with increase in education level (p=0.002). Patients with WHO disease stage 3&4 had a lower PHS compared to patients at stage 1&2 (p=0.006), and depressed patients had lower PHS (p<0.001). MHS improved from baseline to six month study visit (p<0.001), and females had lower MHS compared to males (p=0.01). GPGI was associated with higher income (p=0.04), alcohol use was associated with lower GPGI (p=0.004), and depressed patients had a lower GPGI (p<0.001). Conclusion Quality of life improved over time for PLHIV on ART. Regardless of treatment status, PLHIV with depression or low education level and female gender were at risk of having a poor quality of life. Clinicians and policy makers should be aware of these findings, and address them to improve quality of life for PLHIV.

Conceptualisation of self-management intervention for people with early stage dementia

Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a “care-gap”. Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. Jossey-Bass, Oxford, 1988) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of “everyday life work” (targets 1 and 2) and “biographical work” (target 3), with inclusion of but less emphasis on specific “illness work” (targets 4, 5). We argue that self-management is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia.

Tasks and strategies of self-management of living with antiretroviral therapy in Uganda

There is increasing interest in promoting and supporting self-management of HIV and antiretroviral treatment (ART), including in resource-limited settings. Although the impact of HIV and ART on people in Uganda has been explored, little attention has been paid to how people self-manage. This qualitative study collected data from 20 participants on ART in Wakiso district, Uganda, using in-depth interviews, life histories, and observations to explore the tasks and strategies of living with ART. The identified strategies were compared to two existing self-management frameworks. Results highlighted a range of tasks including obtaining, taking, and adhering to ART medication, monitoring their condition, living with stigma and managing disclosure, maintaining general health, and adjusting to new roles. Participants described a range of strategies or behaviors to manage, which they actively created and used, tailored to their needs and environment. Comparison with existing frameworks revealed many similarities, with some local differences in enactment, and greater emphasis in our sample on obtaining the medication. Interventions to support people with self-management in Uganda, and possibly other resource-limited settings, require careful adaptation to local settings. The degree to which each of these strategies may improve health and quality of life requires further investigation.

Qualitative evaluation of a self-management intervention for people in the early stage of dementia

Self-management programs are effective for people living with chronic illnesses. However, there has been little research addressing self-management for people with dementia in the early stages. This study presents a qualitative evaluation of the experiences of attending a novel self-management program and initial process evaluation. The program was designed with and for people with dementia. It addresses: (a) relationship with family, (b) maintenance of an active lifestyle, (c) psychological well-being, (d) techniques to cope with memory changes and (e) information about dementia. Six participants with early stage dementia completed the intervention that was co-delivered by lay and clinical professional tutors. Participants and tutors attended focus group and interviews at the end of the program to explore their perceptions of the intervention. These were audio-recorded, transcribed verbatim and analysed thematically. Participants reported enjoyment and benefits from the intervention. This was despite some reporting concerns relating to their memory difficulties. The programs flexible nature, focus on strengths and the opportunity to spend time with other people living with dementia were particularly well received. Participants and tutors outlined areas for further improvement. The program was feasible and its flexible delivery appeared to facilitate participant benefit. Emphasis should be placed on maintaining activity and relationships, improving positive well-being and social interaction during the program. Memory of the pleasant experience and strengths focus was evidenced, which may impact positively on quality of life. The results highlight the usefulness and acceptability of self-management for people with early stage dementia and provide initial support for the programs structure and content.

Development and Qualitative Evaluation of a Self-Management Workshop for Testicular Cancer Survivor-Initiated Follow-Up

PURPOSE/OBJECTIVES To describe the needs of testicular cancer survivors, develop a nurse-led workshop, and explore the experience of participation. RESEARCH APPROACH A systematic intervention development process was used to design a self-management workshop for cancer survivors, which then was evaluated qualitatively. SETTING Outpatient clinic in England. PARTICIPANTS 26 healthcare professionals, charity workers, family members, and testicular cancer survivors participated in the intervention development process. Six testicular cancer survivors attended the workshop and participated in the postintervention focus group discussion. METHODOLOGIC APPROACH Ten participants, including four survivors, completed the initial needs assessment interviews. Twenty-six participants then rated the identified needs on two dimensions: importance to self-management and changeability via a self-management intervention. Literature review and expert consultation were used to identify potential workshop components. To explore the experience of attending the intervention, six testicular cancer survivors who participated in the nurse-led workshop were interviewed six weeks later. FINDINGS The workshop was well received by participants, who appreciated the goal-setting and information provision activities. The men also felt that they had benefited from the experience of being in the group. CONCLUSIONS Testicular cancer survivors had unmet post-treatment needs. The systematic intervention development method led to an evidence-based workshop to address those needs. Men reported benefits from attending the workshop, which may help maintain and improve health. INTERPRETATION Nurse-led workshops can address the current unmet needs of testicular cancer survivors. KNOWLEDGE TRANSLATION Testicular cancer survivors may require support with health information, maintaining psychological health, and monitoring cancer symptoms. Survivors also need help planning and maintaining an active lifestyle. In addition, a brief workshop approach to intervention delivery is acceptable to testicular cancer survivors.

Higher Quality of Life and Lower Depression for People on ART in Uganda as Compared to a Community Control Group.

Provision of antiretroviral treatment (ART) to people living with HIV (PLWH) has increased globally. Research measuring whether ART restores subjective well-being to “normal” levels is lacking, particularly in resource limited settings. The study objectives are to compare quality of life and depression symptoms for PLWH on ART to a general community population and to explore factors to explain these differences, including socio-economic status and the impact of urban or rural residence. PLWH on ART (n = 263) were recruited from ART delivery sites and participants not on ART (n = 160) were recruited from communities in Wakiso District, Uganda. Participants were interviewed using the translated World Health Organisation Quality of Life brief measure, the Hopkins Symptom Checklist depression section, and questions about socio-economic status, residence as urban or rural and, for PLWH on ART, self-reported adherence and use of HIV counselling. Compared to the community sample and controlling for location of residence, PLWH on ART had significantly higher quality of life (QOL) for physical, psychological and environment domains, but not the social domain. These differences were not due to socio-economic status alone. Depression scores were significantly lower for PLWH on ART. Both comparisons controlled for the effect of location of residence. People on ART self-reported high adherence and the majority had used HIV counselling services. Our findings show better QOL amongst PLWH on ART compared to a general community sample, which cannot be explained solely by differences in socio-economic status nor location of residence. The general community sample results point towards the challenges of life in this setting. Access to health services may underpin this difference and further research should explore this finding, in addition to identification of psychological mechanisms that relate to better QOL. ART provision infrastructure has clear benefits. Further work should consider sustainability and replication for other health conditions.

Finding Meaning: HIV Self-Management and Wellbeing among People Taking Antiretroviral Therapy in Uganda.

The health of people living with HIV (PLWH) and the sustained success of antiretroviral therapy (ART) programmes depends on PLWH’s motivation and ability to self-manage the condition over the long term, including adherence to drugs on a daily basis. PLWH’s self-management of HIV and their wellbeing are likely to be interrelated. Successful self-management sustains wellbeing, and wellbeing is likely to motivate continued self-management. Detailed research is lacking on PLWH’s self-management processes on ART in resource-limited settings. This paper presents findings from a study of PLWH’s self-management and wellbeing in Wakiso District, Uganda. Thirty-eight PLWH (20 women, 18 men) were purposefully selected at ART facilities run by the government and by The AIDS Support Organisation in and around Entebbe. Two in-depth interviews were completed with each participant over three or four visits. Many were struggling economically, however the recovery of health and hope on ART had enhanced wellbeing and motivated self-management. The majority were managing their condition well across three broad domains of self-management. First, they had mobilised resources, notably through good relationships with health workers. Advice and counselling had helped them to reconceptualise their condition and situation more positively and see hope for the future, motivating their work to self-manage. Many had also developed a new network of support through contacts they had developed at the ART clinic. Second, they had acquired knowledge and skills to manage their health, a useful framework to manage their condition and to live their life. Third, participants were psychologically adjusting to their condition and their new ‘self’: they saw HIV as a normal disease, were coping with stigma and had regained self-esteem, and were finding meaning in life. Our study demonstrates the centrality of social relationships and other non-medical aspects of wellbeing for self-management which ART programmes might explore further and encourage.