The experiences of carers looking after people with Parkinson's disease who exhibit impulsive and compulsive behaviours: An exploratory qualitative study.

AIM: To understand the experiences of carers who were confronted by the development of impulsive and compulsive behaviours. BACKGROUND: Impulsive and compulsive behaviours (ICBs) are a serious complication in Parkinson's disease (PD) strongly associated with dopamine replacement therapy used to treat patients. These behaviours comprise abnormal activities such as pathological gambling, binge eating, compulsive shopping and hypersexuality. These behaviours place a considerable burden on patients and on their carers and families. DESIGN: An exploratory qualitative study. METHODS: Using a convenience sampling approach, 13 carers were recruited to participate in semi-structured interviews. Interviews were conducted over the telephone. Verbatim transcripts were analysed using a thematic analysis approach. COREQ guidelines were adhered to in the reporting of this study. RESULTS: Five main themes were identified: (a) realisation-developing awareness of ICB symptoms and their causes; (b) reacting-confronting and attempts to manage ICBs; (c) reaching out-help-seeking and selective disclosure; (d) reframing-shifting perspectives on ICBs over time; and (e) resignation-impact on relationships and facing the future. CONCLUSIONS: The profound impact of ICBs on quality of life, relationships and economic stability was clear in the carers' accounts. Possible avenues for future clinical research are suggested. RELEVANCE TO CLINICAL PRACTICE: The potentially devastating effects of ICBs provide a strong imperative for nurses and other health professionals to ensure that close monitoring for symptom development together with patient education is always part of practice.

Symptom prevalence, severity and palliative care needs assessment using the Palliative Outcome Scale: a cross-sectional study of patients with Parkinson's disease and related neurological conditions.

BACKGROUND: Palliative care is rarely being offered to patients with Parkinson's disease. AIM: To assess symptom prevalence, severity and palliative care needs in advanced stages of Parkinsonism. DESIGN: A cross-sectional survey using a palliative care assessment tool, the Palliative Outcome Scale was administered to patients. SETTING/PARTICIPANTS: Eight-two patients with a diagnosis of idiopathic Parkinson's disease, multiple systems atrophy or progressive supranuclear palsy were included in the study. RESULTS: Their mean age and disease stages 3-5 Hoehn and Yahr were 67 years and 4.1, respectively. Patients reported a mean of 10.7 (standard deviation = 3.9) physical symptoms. Over 80% had pain, fatigue, day time somnolence and problems with mobility. Other symptoms in 50%-80% included constipation, loss of bladder control, swallowing difficulties, drooling, breathlessness and sleep problems. Symptoms rated as causing severe problems were pain, fatigue, constipation and drooling. Assessment of mood revealed 70% of the patients felt anxiety and 60% had felt depressed. Eight-five per cent felt their families were anxious or worried about them. Thirty-eight per cent would have liked more information and 42% had practical problems that still needed to be addressed. There was a positive correlation between number of symptoms and disease severity (r = 0.39, p = 0.01). The total mean Palliative Outcome Scale score was 13.6 (standard deviation = 6.1), suggesting moderate palliative care needs. CONCLUSION: This is the first study to describe the care needs of people with Parkinson's disease using the Palliative Outcome Scale tool. The burden of symptoms and concerns was high in advanced stages of disease. It might be appropriate that people severely affected by these conditions should be considered for referral to specialist palliative care services.

Social mobilization campaign to tackle immunization hesitancy in Sargodha and Khushab districts of Pakistan.

BACKGROUND: Immunization hesitancy is a delay in acceptance or refusal of vaccines despite availability of vaccination services. If people are not engaged appropriately via communication and social mobilization, doubts about the trade-offs between the benefits and potential side effects persist. The objective of this study was to explore strategies for improved social mobilization to reduce immunization hesitancy. METHODS: Mix of quantitative and qualitative approaches was applied to collect data from a diverse group of respondents in Sargodha and Khushab districts. Quantitative data were collected from 329 community health workers, including vaccinators, lady health workers and lady health supervisors, and school health and nutrition supervisors. In addition, qualitative data were collected from top management of Expanded Programme on Immunization (EPI) through key informant interviews (KIIs) and focus group discussions (FGDs) were conducted with parents. Analysis has been done using SPSS software and detailed transcriptions. RESULTS: Advocacy meetings with local influencers, community group sessions, door-to-door visits by community health workers and mosque announcements are considered the most relevant and appropriate interventions for social mobilization. Community Health Workers (CHWs), cognizant of local culture, are being trusted, though optimum performance is achievable with adequate redressal of hesitancy concerns. However, in some cases negative attitudes of people towards immunization hinder trust towards mobilizers or CHWs. Hence, they leverage active participation of local influencers, teachers and health department officials to convince such stubborn parents. Active community involvement through leveraging support from local religious and non-religious influencers in social mobilization activities increases its acceptance. Community engagement is most effective in rural and hard-to-reach areas when community health workers are skilled in interpersonal communication and information education communication. CONCLUSIONS: Communication committees as oversight mechanism should be established or reactivated to regularly monitor and support mobilization activities through managing affairs like speedy liaison with local administration and local influencers, mobilizers' service related concerns, community-specific hurdles, and deficiencies of awareness-material provision that eventually improves mobilization performance. Resistant community's needs can be redressed through rigorous conduct of men's and women's education sessions by CHWs while giving more time and space to mobilizers to take on board local religious and non-religious influencers to convince conservative/illiterate parents. Higher management should fix policy implementation slippages like training needs assessment of mobilizers and Civil Society Organizations' involvement framework.

Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up.

BACKGROUND: Palliative care has been proposed for progressive non-cancer conditions but there have been few evaluations of service developments. We analysed recruitment, compliance and follow-up data of a fast track (or wait list control) randomised controlled trial of a new palliative care service - a design not previously used to assess palliative care. METHODS/DESIGN: An innovative palliative care service (comprising a consultant in palliative medicine, a clinical nurse specialist, an administrator and a psychosocial worker) was delivered to people severely affected by multiple sclerosis (MS), and their carers, in southeast London. Our design followed the MRC Framework for the Evaluation of Complex Interventions. In phase II we conducted randomised controlled trial, of immediate referral to the service (fast-track) versus a 12-week wait (standard best practice). Main outcome measures were: compliance (the extent the trial protocol was adhered to), recruitment (target 50 patients), attrition and missing data rates; trial outcomes were Palliative Care Outcome Scale and MS Impact Scale. RESULTS: 69 patients were referred, 52 entered the trial (26 randomised to each arm), 5 refused consent and 12 were excluded from the trial for other reasons, usually illness or urgent needs, achieving our target numbers. 25/26 fast track and 21/26 standard best practice patients completed the trial, resulting in 217/225 (96%) of possible interviews completed, 87% of which took place in the patient's home. Main reasons for failure to interview and/or attrition were death or illness. There were three deaths in the standard best practice group and one in the fast-track group during the trial. At baseline there were no differences between groups. Missing data for individual questionnaire items were small (median 0, mean 1-5 items out of 56+ items per interview), not associated with any patient or carer characteristics or with individual questionnaires, but were associated with interviewer. CONCLUSION: This is the first time a fast track (or wait list) randomised trial has been reported in palliative care. We found it achieved good recruitment and is a feasible method to evaluate palliative care services when patients are expected to live longer than 3-6 months. Home interviews are needed for a trial of this kind; interviewers need careful recruitment, training and supervision; and there should be careful separation from the clinical service of the control patients to prevent accidental contamination. TRIAL REGISTRATION: Clinical Trials.Gov NCT00364963.

Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service.

BACKGROUND: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. METHODS/DESIGN: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4-6, 10-12 (before intervention for the standard-practice group), 16-18 and 22-24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial. DISCUSSION: We publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context.

Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES.

AIM: To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London. STUDY DESIGN: Group discussions with informal carers (n=3 groups) and professionals (n = l1 group). SAMPLE AND SETTING: Informal carers within a Bengali-speaking community (n = 26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n = 6). ANALYSIS: Data subject to content analysis. RESULTS: Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying. CONCLUSIONS: These findings, together with participants' views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

Barriers to effective uptake of cancer screening among Black and minority ethnic groups.

AIM: To describe some of the factors that act as barriers to effective uptake of breast and cervical cancer screening services among black minority ethnic (BME) groups living in Brent and Harrow in the UK. DESIGN: A series of focus groups among African Caribbean, African, Gujarati, Pakistani, Greek and Arabic groups were held to discover their perceptions of cancer screening, the barriers to effective uptake and some strategies for intervention. SAMPLE: This consisted of 135 participants: 85 women and 50 men. RESULTS: Analysis of focus group data has revealed poor knowledge, underlying health and cultural beliefs, attitudes, language and unhelpful attitudes of health professionals to be important barriers. In terms of strategies for effective intervention, the most popular strategy for improving uptake of screening services was community-based cancer awareness education that is sensitive to religious and cultural needs. CONCLUSION: There is a need to provide community-based education to increase the uptake of screening services among BME groups. It is essential to plan concurrently to educate GPs and other health professionals in cultural beliefs and customs, language needs, racial awareness and communication skills.

Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors.

BACKGROUND: Palliative care is increasingly offered earlier in the cancer trajectory but rarely in Idiopathic Parkinson's Disease(IPD), Progressive Supranuclear Palsy(PSP) or Multiple System Atrophy(MSA). There is little longitudinal data of people with late stage disease to understand levels of need. We aimed to determine how symptoms and quality of life of these patients change over time; and what demographic and clinical factors predicted changes. METHODS: We recruited 82 patients into a longitudinal study, consenting patients with a diagnosis of IPD, MSA or PSP, stages 3-5 Hoehn and Yahr(H&Y). At baseline and then on up to 3 occasions over one year, we collected self-reported demographic, clinical, symptom, palliative and quality of life data, using Parkinson's specific and generic validated scales, including the Palliative care Outcome Scale (POS). We tested for predictors using multivariable analysis, adjusting for confounders. FINDINGS: Over two thirds of patients had severe disability, over one third being wheelchair-bound/bedridden. Symptoms were highly prevalent in all conditions - mean (SD) of 10.6(4.0) symptoms. More than 50% of the MSA and PSP patients died over the year. Over the year, half of the patients showed either an upward (worsening, 24/60) or fluctuant (8/60) trajectory for POS and symptoms. The strongest predictors of higher levels of symptoms at the end of follow-up were initial scores on POS (AOR 1.30; 95%CI:1.05-1.60) and being male (AOR 5.18; 95% CI 1.17 to 22.92), both were more predictive than initial H&Y scores. INTERPRETATION: The findings point to profound and complex mix of non-motor and motor symptoms in patients with late stage IPD, MSA and PSP. Symptoms are not resolved and half of the patients deteriorate. Palliative problems are predictive of future symptoms, suggesting that an early palliative assessment might help screen for those in need of earlier intervention.