Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease

Background

Parkinson’s disease (PD) is a progressive neurological illness that impacts various aspects of life. Integration of medical and self-management in a collaborative approach to care is needed to enhance functioning and the quality of life of PD patients. In developing an integrated care program at a tertiary PD clinic, we used a co-design process to gather stakeholder input.

Methods

This is a cross-sectional mixed methods study using surveys and interviews. Patient and caregiver participants from the clinic completed two questionnaires to evaluate perceived receipt of self-management support (Patient Assessment of Care for Chronic Conditions) and activation for managing their health condition (Patient or Caregiver Activation Measure®). A subset of these participants and healthcare providers took part in semi-structured interviews. Survey data were described and tested for relationships between patient characteristics and questionnaire scores using Spearman’s rank-order correlation. Interviews were analyzed using conventional content analysis.

Results

Fifty-seven PD patients and thirty caregivers completed the questionnaires. Thirteen patients, six caregivers, and six healthcare providers were interviewed. 58% of participants were moderately to highly activated to manage their lives with PD. Participants’ perceptions of self-management support varied but was lacking in dimensions of goal-setting and follow-up support/coordination. Qualitative analysis revealed four overarching themes related to experiences of managing PD: activation, self-management support, coordinated care, and access to services.

Conclusions

This first study to explore patient activation in PD found high levels of activation but moderate to low levels of self-management support. The co-design process highlighted important aspects of a more collaborative approach to care.

     

To What Extent Do Physician Orders for Life-Sustaining Treatment (POLST) Reflect Patients' Preferences for Care at the End of Life?

ObjectiveTo assess whether medical orders within Physician Orders for Life-Sustaining Treatment (POLST) forms reflect patients' preferences for care at the end of life.DesignThis cross-sectional study assessed the agreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation performed by an independent researcher during a single episode of hospitalization.Setting and ParticipantsInpatients at a single public university hospital, aged 21 years or older, and for whom one of their attending physicians provided a negative answer to the following question: “Would I be surprised if this patient died in the next year?” Data collection occurred between October 2016 and September 2017.MeasuresAgreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation was measured by kappa statistics.ResultsSixty-two patients were interviewed. Patients' median (interquartile range) age was 62 (56-70) years, and 21 patients (34%) were women. Overall, in 7 (11%) cases, disagreement in at least 1 medical order for life-sustaining treatment was found between POLST forms and the content of the independent advance care planning conversation. The kappa statistic for cardiopulmonary resuscitation was 0.92 [95% confidence interval (CI): 0.82-1.00]; for level of medical intervention, 0.90 (95% CI: 0.81-0.99); and for artificially administered nutrition, 0.87 (95% CI: 0.75-0.98).Conclusions and ImplicationsThe high level of agreement between medical orders in POLST forms and the documentation in an independent advance care planning conversation offers further support for the POLST paradigm. In addition, the finding that the agreement was not 100% underscores the need to confirm frequently that POLST medical orders accurately reflect patients' current values and preferences of care.     

Cognitive interviewing of the US National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE)

Purpose

The National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is a library of question items that enables patient reporting of adverse events (AEs) in clinical trials. This study contributes content validity evidence of the PRO-CTCAE by incorporating cancer patient input of the relevance and comprehensiveness of the item library.

Methods

Cognitive interviews were conducted among patients undergoing chemotherapy or radiation therapy at multiple sites to evaluate comprehension, memory retrieval, judgment, and response mapping related to AE terms (e.g., nausea), attribute terms (regarding frequency, severity, or interference), response options, and recall period. Three interview rounds were conducted with ≥20 patients completing each item per round. Items were modified and retested if ≥3 patients exhibited cognitive difficulties or if experienced by ≤25 % patients.

Results

One hundred and twenty-seven patients participated (35 % ≤high school, 28 % non-white, and 59 % female). Most AE terms (63/80) generated no cognitive difficulties. The remaining 17 were modified without further difficulties by Round 3. Terms were comprehended regardless of education level. Attribute terms and response options required no modifications. Patient adherence to recall period (7 days) was improved when the reference period was incorporated.

Conclusions

This study provides evidence confirming comprehension of the US English language versions of items in the PRO-CTCAE library for measuring symptomatic AEs from the patient perspective within the context of cancer treatment. Several minor changes were made to the items to improve item clarity, comprehension, and ease of response judgment. This study helps to establish the content validity of PRO-CTCAE items for patient reporting of AEs during cancer treatment.     

Partners in care?: views and experiences of carers from a cohort study of the early implementation of the Mental Health (Care & Treatment) (Scotland) Act 2003

Carers are seen as legitimate stakeholders in wider policy processes and increasingly as ‘co‐producers’ and key providers of care. Mental health carers, however, especially those caring for relatives subject to compulsory care and treatment, often feel overlooked and marginalised, caring in complex circumstances with little or no professional support. The Mental Health (Care & Treatment) (Scotland) Act 2003 (MHCT Act) implemented in 2005 aspired to change this for the better. This article focuses specifically on findings from seven focus groups and 10 individual interviews with 33 carers from three Health Board areas and the State Hospital in Scotland. Interviews were conducted at two stages during 2007 and 2008 as part of a wider study. Participating carers were supporting relatives who were under different compulsory measures and so had experience of new procedures under the MHCT Act. The data were gathered as part of a cohort study exploring service users’, carers’ and professionals’ early experiences of the Act’s implementation. A topic guide was used to explore the impact of compulsion on carers; the ‘Named Person’ role; Mental Health Tribunals; the principles underpinning the MHCT Act; and suggestions for improving the law. The study found that new provisions, in particular the Named Person role and Mental Health Tribunals, had resulted in positive change. However, many carers still felt isolated and unsupported. They remained critical of the lack of consultation and involvement at both individual and collective levels. Few were aware of their right to a carer’s assessment and many were sceptical that this would make any difference. Acknowledging the study’s limitations, we discuss the implications for practice in light of broader policy agendas of personalisation, recovery, recognition for carers and promotion of more community‐based mental health services.     

Measuring Primary Care for Children of Latino Farmworkers: Reliability and Validity of the Parent’s Perceptions of Primary Care Measure (P3C)

This study evaluates the feasibility, reliability, and validity of the Parents Perceptions of Primary Care measure (P3C) in an underserved population: children of Latino farm workers. Bilingual research assistants verbally administered the P3C, as well as a measure of child health-related quality of life (HRQL: the PedsQL 4.0) and demographic questions to 297 Latino farm worker parents of young children, in San Diego and Imperial Counties. The P3C was found to be feasible, as measured by a very low percent of missing/do not know values. Internal consistency reliability for the Total Scale and most subscales was strong. The P3Cs validity was demonstrated through factor analysis of the subscales, by showing that scores were lower for children without a regular physician and for children experiencing foregone health care, and by demonstrating that P3C scores were related to HRQL. The P3C can be useful to various stakeholders in measuring primary care for vulnerable populations.     

“Could an Increased Focus on Identity Development in the Provision of Children’s Services Help Shape Positive Outcomes for Care Leavers?” A Literature Review

The focus for this literature review developed from reading American research by Oyserman and Destin around the theme of identity and possible selves. The intention of this review was to consider whether an identity-based perspective could be applied to investigate the multiple outcomes of UK care leavers. The aim was to explore the relevant literature to consider whether an increased emphasis on identity development in the provision of children’s services could help increase positive outcomes for care leavers. Children’s Services in this review is taken to mean all agencies involved in the provision of services to children and young people in and leaving care. Although outcomes for children in care have improved in recent years, there still remains a large widening gap between these and the outcomes for all children. Therefore understanding differences in how young people manage, can provide important policy and practice implications. The majority of articles reflected an interpretative epistemology where a phenomenological approach was used to gain data relating to the “lived experience” of the participants. A key objective was therefore to conduct a critical interpretive analysis of the literature using an ecological approach to uncover answers to the research question.     

What lessons can be drawn from tuberculosis (TB) control in China in the 1990s? An analysis from a health system perspective

China has made a significant achievement in tackling the TB epidemic over the last decade, due largely to the implementation of directly-observed treatment strategy (DOT). The cure rate of TB cases reached more than 90% for registered TB patients. However, the case detection rate has, unfortunately, been very low (some 30%). Using available information, this paper identifies four main problems facing TB control in China, these are, low case finding, a substantial proportion of TB patients failing to complete standardised treatment, increased proportion of MDR TB patients, and lack of effective TB control among "floating populations". The paper also analyses the possible causes of these problems associated with socio-economic barriers in care seeking, ineffectiveness of TB services, particularly in poor areas, lack of co-operation between health facilities, and weakness of political and financial commitments of local governments to TB control. The paper ends with the discussion of opportunities and challenges facing TB control and makes recommendations for further actions and research.     

The role (or not) of economic evaluation at the micro level: Can Bourdieu’s theory provide a way forward for clinical decision-making?

Despite increasing interest in health economic evaluation, investigations have shown limited use by micro (clinical) level decision-makers. A considerable amount of health decisions take place daily at the point of the clinical encounter; especially in primary care. Since every decision has an opportunity cost, ignoring economic information in family physicians’ (FPs) decision-making may have a broad impact on health care efficiency. Knowledge translation of economic evaluation is often based on taken-for-granted assumptions about actors’ interests and interactions, neglecting much of the complexity of social reality. Health economics literature frequently assumes a rational and linear decision-making process. Clinical decision-making is in fact a complex social, dynamic, multifaceted process, involving relationships and contextual embeddedness. FPs are embedded in complex social networks that have a significant impact on skills, attitudes, knowledge, practices, and on the information being used. Because of their socially constructed nature, understanding preferences, professional culture, practices, and knowledge translation requires serious attention to social reality. There has been little exploration by health economists of whether the problem may be more fundamental and reside in a misunderstanding of the process of decision-making. There is a need to enhance our understanding of the role of economic evaluation in decision-making from a disciplinary perspective different than health economics. This paper argues for a different conceptualization of the role of economic evaluation in FPs’ decision-making, and proposes Bourdieu’s sociological theory as a research framework. Bourdieu’s theory of practice illustrates how the context-sensitive nature of practice must be understood as a socially constituted practical knowledge. The proposed approach could substantially contribute to a more complex understanding of the role of economic evaluation in FPs’ decision-making.     

The Long-Term Cost to the UK NHS and Social Services of Different Durations of IV Thiamine (Vitamin B1) for Chronic Alcohol Misusers with Symptoms of Wernicke’s Encephalopathy Presenting at the Emergency Department

Background

Wernicke’s encephalopathy (WE) is an acute neuropsychiatric condition caused by depleted intracellular thiamine, most commonly arising in chronic alcohol misusers, who may present to emergency departments (EDs) for a variety of reasons. Guidelines recommend a minimum 5-day course of intravenous (IV) thiamine in at-risk patients unless WE can be excluded.

Objective

To estimate the cost impact on the UK public sector (NHS and social services) of a 5-day course of IV thiamine, vs a 2- and 10-day course, in harmful or dependent drinkers presenting to EDs.

Methods

A Markov chain model compared expected prognosis of patients under alternative admission strategies over 35 years. Model inputs were derived from a prospective cohort study, expert opinion via structured elicitation and NHS costing databases. Costs (2012/2013 price year) were discounted at 3.5 %.

Results

Increasing treatment from 2 to 5 days increased acute care costs but reduced the probability of disease progression and thus reduced the expected net costs by GBP87,000 per patient (95 % confidence interval GBP19,300 to GBP172,300) over 35 years.

Conclusions

Increasing length of stay to optimize IV thiamine replacement will place additional strain on acute care but has potential UK public sector cost savings. Social services and the NHS should explore collaborations to realise both the health benefits to patients and savings to the public purse.

     

Representations and practices of prevention in elderly populations: Investigating acceptance to participate in and adhesion to an intervention study for the prevention of Alzheimer’s disease (accept study) — The need for a multidisciplinary approach

Background

In the domain of Alzheimer??s disease (AD) prevention, various potentially protective factors have been identified in epidemiological studies. Although the results of these observational studies have been relatively consistent, the results of intervention studies remain disappointing. Methodological problems could explain these negative results, like the selection of the population; a plausible assumption is that the older people who agree to take part in these intervention studies differ from those who refuse, and are those that are least likely to benefit from such programs. The aim of this study was (i) to study the determinants of participation in and adhesion to a prevention trial in a population of older individuals via a quantitative approach using a questionnaire, (ii) to study the representations and practices of prevention in this population using a qualitative approach using semi-structured interviews and focus groups.

Method

The study population for the ACCEPT study was recruited at the time of inclusion of subjects in a prevention trial. The population was made up of persons aged 70 years or older, living at home and demonstrating some form of frailty, defined as a spontaneous memory complaint to their general practitioner or difficulties in carrying out instrumental activities of daily living. We used a quantitative approach based on the administration of a self-completed questionnaire sent to 1680 subjects having accepted to take part in the prevention trial, and to the sample of subjects meeting the inclusion criteria but having refused to take part. The qualitative approach, carried out at the moment of inclusion, involved subjects that having accepted to take part and subjects that having refused. Semi-structured interviews were carried out in order to understand the logic leading to refusal or acceptance.

Conclusion

The analysis of the results will combine the viewpoints of the different disciplines. It will allow us to better understand the logic at work, to characterise the populations at risk of refusal, and perhaps to remove some of the barriers to participation in prevention programs. The identification of such barriers will provide feedback in terms of the conception and management of prevention measures.