•Remote monitoring supports self-management, by increasing patient confidence.•Remote monitoring enables early identification of clinical exacerbations.•Remote monitoring increased shared ...decision-making.•Patients unfamiliar with technology were more concerned and doubted reliability.•Patients value face-to-face consultations with clinicians.
To describe the range of patients’ beliefs, attitudes, expectations, and experiences of remote monitoring for chronic conditions across different healthcare contexts and populations.
We searched MEDLINE, Embase, PsychINFO, and CINAHL, Google Scholar, and reference lists of related studies through to July 2017. Thematic synthesis was used to analyse the findings of the primary studies. Study characteristics were examined to explain differences in findings.
All healthcare settings
Adults with chronic diseases
Patient beliefs, attitudes, expectations and experiences of remote monitoring
We included 16 studies involving 307 participants with chronic obstructive pulmonary disease, heart failure, diabetes, hypertension, and end stage kidney disease. The studies were conducted in 8 countries. We identified four themes: gaining knowledge and triggering actions (tracking and responding to change, prompting timely and accessible care, supporting self-management and shared decision-making); reassurance and security (safety in being alone, peace of mind); concern about additional burden (reluctance to learn something new, lack of trust in technology, avoiding additional out-of-pocket costs), and jeopardising interpersonal connections (fear of being lost in data, losing face to face contact).
For patients with chronic disease, remote monitoring increased their disease-specific knowledge, triggered earlier clinical assessment and treatment, improved self-management and shared decision-making. However, these potential benefits were balanced against concerns about losing interpersonal contact, and the additional personal responsibility of remote monitoring.
Chronic kidney disease (CKD) is a common and costly condition to treat. Economic evaluations of health care often incorporate patient preferences for health outcomes using utilities. The objective of ...this study was to determine pooled utility-based quality of life (the numerical value attached to the strength of an individual's preference for a specific health outcome) by CKD treatment modality.
We conducted a systematic review, meta-analysis, and meta-regression of peer-reviewed published articles and of PhD dissertations published through 1 December 2010 that reported utility-based quality of life (utility) for adults with late-stage CKD. Studies reporting utilities by proxy (e.g., reported by a patient's doctor or family member) were excluded. In total, 190 studies reporting 326 utilities from over 56,000 patients were analysed. There were 25 utilities from pre-treatment CKD patients, 226 from dialysis patients (haemodialysis, n = 163; peritoneal dialysis, n = 44), 66 from kidney transplant patients, and three from patients treated with non-dialytic conservative care. Using time tradeoff as a referent instrument, kidney transplant recipients had a mean utility of 0.82 (95% CI: 0.74, 0.90). The mean utility was comparable in pre-treatment CKD patients (difference = -0.02; 95% CI: -0.09, 0.04), 0.11 lower in dialysis patients (95% CI: -0.15, -0.08), and 0.2 lower in conservative care patients (95% CI: -0.38, -0.01). Patients treated with automated peritoneal dialysis had a significantly higher mean utility (0.80) than those on continuous ambulatory peritoneal dialysis (0.72; p = 0.02). The mean utility of transplant patients increased over time, from 0.66 in the 1980s to 0.85 in the 2000s, an increase of 0.19 (95% CI: 0.11, 0.26). Utility varied by elicitation instrument, with standard gamble producing the highest estimates, and the SF-6D by Brazier et al., University of Sheffield, producing the lowest estimates. The main limitations of this study were that treatment assignments were not random, that only transplant had longitudinal data available, and that we calculated EuroQol Group EQ-5D scores from SF-36 and SF-12 health survey data, and therefore the algorithms may not reflect EQ-5D scores measured directly.
For patients with late-stage CKD, treatment with dialysis is associated with a significant decrement in quality of life compared to treatment with kidney transplantation. These findings provide evidence-based utility estimates to inform economic evaluations of kidney therapies, useful for policy makers and in individual treatment discussions with CKD patients.
Background In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients’ priorities. ...Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. Study Design Nominal group technique. Setting & Participants Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). Methodology Identification and ranking of outcomes. Analytical Approach Mean rank score (of 10) for top 10 outcomes and thematic analysis. Results 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. Limitations Only English-speaking participants were eligible. Conclusions Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.
Physical inactivity accounts for 9% of all deaths worldwide and is among the top 10 risk factors for global disease burden. Nearly half of people aged over 60 years are inactive. Efforts to identify ...which factors influence physical activity behaviour are needed.
To identify and synthesise the range of barriers and facilitators to physical activity participation.
Systematic review of qualitative studies on the perspectives of physical activity among people aged 60 years and over. MEDLINE, EMBASE, CINAHL, PsychINFO and AMED were searched. Independent raters assessed comprehensiveness of reporting of included studies. Thematic synthesis was used to analyse the data.
From 132 studies involving 5987 participants, we identified six major themes: social influences (valuing interaction with peers, social awkwardness, encouragement from others, dependence on professional instruction); physical limitations (pain or discomfort, concerns about falling, comorbidities); competing priorities; access difficulties (environmental barriers, affordability); personal benefits of physical activity (strength, balance and flexibility, self-confidence, independence, improved health and mental well-being); and motivation and beliefs (apathy, irrelevance and inefficacy, maintaining habits).
Some older people still believe that physical activity is unnecessary or even potentially harmful. Others recognise the benefits of physical activity, but report a range of barriers to physical activity participation. Strategies to enhance physical activity participation among older people should include (1) raising awareness of the benefits and minimise the perceived risks of physical activity and (2) improving the environmental and financial access to physical activity opportunities.
Background Although home hemodialysis (HD) is associated with better survival compared with hospital HD, the burden of treatment may be intensified for patients and their caregivers and deter ...patients from this treatment choice. We describe patient and caregiver perspectives and experiences of home HD to inform home HD programs that align with patient preferences. Study Design Systematic review of qualitative studies. Setting & Population Adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinions about home HD. Search Strategy & Sources MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists were searched to October 2013. Analytical Approach Thematic synthesis. Results 24 studies involving 221 patients (home HD n = 109, hospital HD n = 97, and predialysis n = 15) and 121 caregivers were eligible. We identified 5 themes: vulnerability of dialyzing independently (fear of self-needling, feeling unqualified, and anticipating catastrophic complications), fear of being alone (social isolation and medical disconnection), concern of family burden (emotional demands on caregivers, imposing responsibility, family involvement, and medicalizing the home), opportunity to thrive (re-establishing a healthy self-identity, gaining control and freedom, strengthening relationships, experiencing improved health, and ownership of decision), and appreciating medical responsiveness (attentive monitoring and communication, depending on learning and support, developing readiness, and clinician validation). Limitations Non-English articles were excluded. Conclusions Patients and caregivers perceive that home HD offers the opportunity to thrive; improves freedom, flexibility, and well-being; and strengthens relationships. However, some voice anxiety and fear about starting home HD due to the confronting nature of the treatment and isolation from medical and social support. Acknowledging and addressing these apprehensions can improve the delivery of predialysis and home HD programs to better support patients and caregivers considering home HD.
Several disciplines, among them health, sociology, and economics, provide strong evidence that social context is important to individual choices. It is therefore surprising that relatively little ...research has been focused on integrating the effect of social influence into choice models, especially given the importance of such choices in healthcare. This study developed and empirically tested a choice model that accounts for social network influences in a discrete choice experiment (DCE). We focused on maternal choices for childhood vaccination in Australia, and used an econometric choice model that explicitly 1) incorporated vaccine schedule characteristics, benefits and costs, and 2) represented up to ten different identifiable key influencer types (e.g., partner, parents, friends, healthcare professionals, inter alia), allowing for the attribution of directional importance of each influencer on the gravid woman's decision to adhere to or reject childhood vaccination. Pregnant women (N = 604) aged 18 years and older recruited from an online panel completed a survey, including a DCE and questions about key influencers. A two-class ordered latent class model was conducted to analyse the DCE data, which assumes that the underlying latent driver (in our case the WHO vaccine hesitancy scale) is ordered, to give a practical interpretation of the meaning of the classes. When the choice model considered both childhood vaccination attributes and key influencers, a very high model fit was reached. The impact of key influencers on maternal choice for childhood vaccination was massive compared to the impact of childhood vaccination attributes. The marginal impact differed between key influencers. Our DCE study showed that the maternal decision for childhood vaccination was essentially almost completely socially driven, suggesting that the potential impact of social network influences can and should be considered in health-related DCEs, particular those where there are likely to be strong underlying social norms dictating decision maker behaviour.
Anal cancer is a relatively rare neoplasm, related to human papillomavirus (HPV), with an incidence that does not warrant general screening. However, as many cases occur in identifiable high-risk ...populations, targeting these groups may be cost-effective. Screening for anal cancer in men who have sex with men (MSM) may be appropriate, given their elevated risk of anal cancer. Examining existing cost-effectiveness analyses can help inform the design and conduct of future clinical and economic studies.A review of the literature was performed using three databases to identify studies that assessed the cost-effectiveness of anal cancer screening in MSM. Five analyses were identified: four modelled the cost-effectiveness of cytological screening over a patient’s lifetime, and estimated final health outcomes as survival or quality adjusted survival. The fifth presented a decision analysis with intermediate health outcomes only and did not extrapolate to longer-term health outcomes.Several factors influenced the incremental cost-effectiveness ratios. These factors were related to a paucity of primary data and included: availability of longer-term epidemiological and natural history data; availability of utility-based quality of life data from an appropriate respondent population; appropriate resource use information; and availability of information on screening adherence.There is considerable uncertainty in model results: analyses from the United States suggest screening is almost always cost-effective; analyses from the United Kingdom suggest that screening is unlikely to be cost-effective. Uncertainty is primarily driven by data paucity; by summarising key uncertainties in existing models, this review can inform the design and conduct of future studies.
Prostate cancer is the most commonly diagnosed non-skin cancer in men. Screening for prostate cancer is widely accepted; however concerns regarding the harms outweighing the benefits of screening ...exist. Although patient's play a pivotal role in the decision making process, men may not be aware of the controversies regarding prostate cancer screening. Therefore we aimed to describe men's attitudes, beliefs and experiences of prostate cancer screening.
Systematic review and thematic synthesis of qualitative studies on men's perspectives of prostate cancer screening. Electronic databases and reference lists were searched to October 2016.
Sixty studies involving 3,029 men aged from 18-89 years, who had been screened for prostate cancer by Prostate Specific Antigen (PSA) or Digital Rectal Examination (DRE) and not screened, across eight countries were included. Five themes were identified: Social prompting (trusting professional opinion, motivation from family and friends, proximity and prominence of cancer); gaining decisional confidence (overcoming fears, survival imperative, peace of mind, mental preparation, prioritising wellbeing); preserving masculinity (bodily invasion, losing sexuality, threatening manhood, medical avoidance); avoiding the unknown and uncertainties (taboo of cancer-related death, lacking tangible cause, physiological and symptomatic obscurity, ambiguity of the procedure, confusing controversies); and prohibitive costs.
Men are willing to participate in prostate cancer screening to prevent cancer and gain reassurance about their health, particularly when supported or prompted by their social networks or healthcare providers. However, to do so they needed to mentally overcome fears of losing their masculinity and accept the intrusiveness of screening, the ambiguities about the necessity and the potential for substantial costs. Addressing the concerns and priorities of men may facilitate informed decisions about prostate cancer screening and improve patient satisfaction and outcomes.
Objective Working in partnership with Indigenous communities in South Australia, we aimed to develop, pilot test and estimate utility scores for health states relating to cervical cancer screening, ...precancer, and invasive cervical cancer and precancer/cancer treatment among Indigenous women. Methods Development and pilot testing of hypothetical cervical cancer health states, specifically through the lens of being an Indigenous Australian woman, was done with an Indigenous Reference Group in conjunction with five female Indigenous community members. Six health states were developed. These included: (1) Screened: cytology normal; (2) human papillomaviruses (HPV) positive with cytology normal; (3) low grade cytology (LSIL);(4) high grade cytology (HSIL); (5) early stage cervical cancer and; (6) later stage cervical cancer. Utility scores were calculated using a two-stage standard gamble approach among a large cohort of Indigenous Australian women taking part in a broader study involving oral HPV infection. The mean and standard deviation (SD) of the rank, percentage of respondents with a utility = 1 (perfect health) and utility score of each health state was summarised. Mean (SD) and medians and inter-quartile range (IQR) over 12 months and lifetime duration were calculated. Potential differences by age and residential location were assessed using the Wilcox Sum Rank test. Results Data was obtained from 513 Indigenous women aged 19+ years. Mean utility scores were higher for the four non-cancer health states than for invasive cervical cancer states (p-values <0.05). Lower mean utility scores were observed for late stage cervical cancer, with 0.69 at 12 months and 0.70 for lifetime duration (Intra-class correlation coefficients = 0.425). Higher utility scores were observed for the four non-cancer health states among non-metropolitan participants (ranged from 0.93 to 0.98) compared with metropolitan participants (ranged from 0.86 to 0.93) (p-values<0.05). Conclusion Among a large cohort of Indigenous Australian women, the reduction in quality of life (which utilities reflect) was perceived to be greater with increasing severity of cervical cancer health states. There were differences observed by geographic location, with positive cervical screening and precursor cancer-related quality of life being much higher among non-metropolitan-dwelling participants. These utility values, from one of the largest such studies ever performed in any population will be uniquely able to inform modelled evaluations of the benefits and costs of cervical cancer prevention interventions in Indigenous women.
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