Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson’s. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson’s. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson’s found the sessions acceptable and helpful.
second set was obtained using the EQ-5D3L instrument and aimed at assessing patients' QoL. Results: Our results have revealed that the mean total economic burden of PC was 40,609 EGP/patient/annum. The majority of which was categorized under direct medical costs (33,878 EGP) for treatment or follow-up purposes. Indirect costs averaged 4,872 EGP. Direct non-medical costs were no more than 4.5% of the total cost encountered by patients. Regarding patients' QoL, our results have demonstrated that PC patients suffered most from severe pain (39%), and severe disease-related anxiety (31%). The overall QoL as perceived by patients was described as "unsatisfactory" by 25.5%, "moderate" by 45.5%, and only 29% had an overall "good" QoL. Conclusions: Despite of the fact that 91% of our patients were covered by different insurance plans, direct medical costs represented the major economic burden affecting those patients. Hence, expanding coverage to minimize such a financial burden is recommended. Moreover, our results suggest that more aggressive pain management programs, in addition to psychological support might warrant a better QoL for Egyptian patients diagnosed with PC.
Whether health values should be elicited from the perspective of patients or the general public is still an open debate. The overall aim of this paper is to increase knowledge on the role of experience in health preference-based valuation research. The objectives of this paper are threefold. First, we elaborate the idea of experience-based (EB) values under the informed value or knowledge viewpoint. We think the whole scope of knowledge about the health states involved in valuation exercises is not fully integrated in the previous literature. For instance, personal knowledge based on past experiences, contemplating the health state as a likely future condition, knowing someone who is currently experiencing the state, or just receiving detailed information about the health states; all these situations capture different nuances of health-related experience which are not explicitly referred to in valuation tasks. Second, we propose a framework where the extended factor of experience is detached from other factors interwoven into the valuation exercise. Third, we examine how experience is tackled in different value sets (EB or non-EB) identified via a literature review. We identified the following elements (and items) in a value set: health state (without description, described using a multi-attribute instrument, described using other method), reference person (the respondent; other person, similar/known/hypothetical), time frame (past, present, future), raters (public, representative/convenience; vested interest, patients/other) and experience (personal experience, past/present/future; vicarious experience, affective/non-affective; no experience). Forty-nine valuation exercises were extracted from 22 reviewed papers and classified following our suggested set of elements and items. The results show that the role of experience reported in health valuation-related papers is frequently disregarded or, at most, minimised to the item of personal experience (present)-linked to self-reported health.
Usual health-related quality-of-life measures can partially explain different well-being dimensions, yet they fail to capture part of the broader impact of disease on subjective well-being. Further empirical research into the relationship between subjective well-being and the EQ-5D Parkinson's disease longitudinally, and in different disease areas, is required, and further standardization of subjective well-being measures is recommended.
Background Uncertainty about the benefits new cancer medicines will deliver in clinical practice risks delaying patient access to new treatment options in countries such as England, where the cost effectiveness of new medicines affects reimbursement decisions. Outcome-based payment (OBP) schemes, whereby the price paid for the drug is linked to patients' real-world treatment outcome(s) has been put forward as a mechanism to accelerate access. Although OBP schemes have generally focused on clinical outcomes to determine reimbursement, the degree to which these represent the outcomes that are important to patients is unclear. Objective To advance the application of OBP we ask, what outcomes do patients with cancer value (most) that might form a practical basis for OBP? Methods A review of the literature on outcomes in cancer produced a long list of candidates. These were evaluated in a focus group with patients with cancer and were then, in a second focus group, distilled to a shortlist of ten outcomes using a card sort method. The ten outcomes were included in an online survey of patients with cancer and carers, who were asked to rank the importance of each outcome. Results The focus groups identified a range of both clinical and functional outcomes that are important to patients. Analyses of the 164 survey responses suggested that the four most important outcomes to patients and carers are survival; progression, relapse or recurrence; post-treatment side effects; and return to normal activities of daily life. Conclusion Commissioners of cancer services wishing to instigate an OBP scheme should prioritise collecting data on these outcomes as they are important to patients. Of these, only mortality data are routinely collected within the national health service (NHS). Progression and some morbidity data exist but are not currently linked, creating a challenge for OBP. Key Points for Decision Makers Outcome-based payment schemes for new medicines should address the outcomes that patients and carers value most. The four most important outcomes to patients and carers are survival; progression, relapse or recurrence; posttreatment side effects; and return to normal activities of daily life. Only mortality data are routinely collected within the National Health Service; collecting data on the four core outcomes should be prioritised to realise outcome-based payment for some new cancer medicines in future.
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