Quality of life of patients with spinal muscular atrophy: A systematic review

ObjectivesTo systematically review the literature of quality of life (QoL) of patients with spinal muscular atrophy (SMA), a rare, autosomal-recessive neuromuscular disease associated with extensive morbidity and elevated mortality.MethodsWe searched Embase, Web of Science, and PubMed for full-text, English-language articles (published between January 1, 2000 and July 31, 2018) reporting results from studies of QoL of patients with SMA. We excluded review and editorial articles, studies reporting results for samples comprising <5 patients (to allow for meaningful inference), and case reports/qualitative assessments.ResultsOf 824 identified articles, 15 met study criteria. Included publications contained data derived from samples from a total of 11 countries and three continents (Europe, North America, and South America). Estimates of the latent trait, primarily derived using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the PedsQL 3.0 Neuromuscular Module, indicated impairment in patient QoL, in particular physical functioning. However, both patient self- and caregiver proxy-assessments varied markedly across studies and subgroups. Among adult individuals, the mean self-assessed EuroQol-5D-3L utility has been estimated at 0.16 for a pooled sample of patients with SMA type I, II, and III, and −0.01 for SMA type II. Little is known of the impact of available treatments, including nusinersen, on patient QoL.ConclusionsOur review show that QoL is impaired in SMA, mainly due to compromised physical health, but also reveal that little is known of the impact of the disease across different phenotypes and clinical interventions.     

Information infrastructure and quality person-centred support in supported accommodation: An integrative review

ObjectivesTo integrate findings on the information infrastructure for people with intellectual or developmental disability (I/DD) living in supported accommodation, to understand how documentation use impacts person-centred support.MethodsWe conducted an integrative literature review. Following screening by two independent reviewers, we included English language peer-reviewed empirical studies (n = 34) on documentation use for people with I/DD in domestic-scale supported accommodation. We appraised quality and extracted information for iterative comparative thematic and content analysis.ResultAll studies reported written documentation regarding either the person with disability or the residence. Eighteen studies focused on health-specific information. We identified three key themes impacting on the person-centred support; 1) level of inclusion and independence of people with I/DD, 2) the culture of support within group homes, and 3) the quality use of information.ConclusionsInformation infrastructure is closely aligned with the support culture in residences and can affect whether and to what extent key stakeholders (i.e., people with I/DD, family members) are involved in making decisions about healthcare and support needs.Practice implicationsSurveying local service health information infrastructure can provide crucial insights which can be leveraged to improve the safety and quality of supports provided for people living in supported accommodation.     

Depression’s response to fear tactics: An integration of health promotion principles,eye-tracking technology and clinical tools

ObjectiveThe main objective of this study was to utilize eye-tracking technology and self-report measures to test the effectiveness of varying strengths of fear appeals when educating about the seriousness of depression and motivate depressed individuals to engage in health-information-seeking.MethodsWe analyzed data from 117 university employees affected by a range of depression symptoms who were randomly assigned to a low-threat, moderate threat, and high-threat message condition in a lab-based experimental setting. Attention patterns were captured while participants viewed the health message. A particular emphasis was placed on understanding the role of valence and arousal in determining attention patterns.ResultsAttentional processes induced emotions (valence) and intensity (arousal) and differed by strength of fear appeal, but were not influenced by symptoms of depression in this study. Arousal mediated the effects of strong fear appeals on attitudes toward information-seeking, whereas negative emotions did not.Conclusion and practice implicationsUntil further research suggests otherwise, caution is warranted when utilizing fear appeals that are highly arousing for health education and promotion.     

Effectiveness of a health belief model intervention using a lay health advisor strategy on mouth self-examination and cancer screening in remote aboriginal communities: A randomized controlled trial

ObjectiveOral cancers caused by chewing betel nuts have a poor prognosis. Using a lay health advisor (LHA) can increase access to health care among underprivileged populations. This study evaluated a health belief model (HBM) intervention using LHAs for oral cancer screening (OCS) and mouth self-examination (MSE) in remote aboriginal communities.MethodsThe participants were randomly assigned to intervention (IG; n = 171) and control groups (CG; n = 176). In the IG, participants received a three-chapter one-on-one teaching course from LHAs, whereas those in the CG received only a leaflet.ResultsThe IG participants were 2.04 times more likely to conduct a monthly MSE than those in the CG (95% confidence interval: 1.31–3.17) and showed significantly higher self-efficacy levels toward OSC and MSE (β = 0.53 and 0.44, effect size = 0.33 and 0.25, respectively) and a lower barrier level for OSC (β = −1.81, effect size = −0.24).ConclusionThe LHA intervention had a significantly positive effect on MSE, strengthening self-efficacy and reducing barriers to OCS among aboriginal populations.Practice ImplicationsThe effectiveness of the clinical treatment of underprivileged group can be improved through early diagnosis, which can be achieved using LHAs to reduce barriers to OSC.     

Social resource assessment: Application of a novel communication tool during hospital discharge

Objective

To evaluate an interactive tool designed to help patients communicate their social resources supportive of home recovery to health care providers.

Assessing helpful and harmful family and friend involvement in adults’ type 2 diabetes self-management

Objective: Develop and evaluate a measure assessing helpful and harmful family/friends’ involvement in adults’ type 2 diabetes (T2D) self-management.Methods: Prior mixed-methods research, cognitive interviews, and expert input informed measure development. We administered the measure in two studies (N = 392 and N = 512) to evaluate its factor structure, internal consistency reliability, test-retest reliability, and construct, criterion and predictive validity.Results: Analyses supported a two-factor solution: helpful and harmful involvement with internal consistency reliability α = .86 and .72, respectively. Three-month test-retest reliability was rho = 0.64 for helpful and rho = 0.61 for harmful (both p < 0.001). Over 90% reported at least one instance of family/friend involvement in the past month. Associations with other measures of diabetes involvement were as anticipated (all p < .01). Helpful and harmful involvement were independently associated with diabetes self-efficacy, diet, blood glucose testing and medication adherence cross-sectionally [βs 0.13–0.39 helpful, ?0.12–?0.33 harmful; all p < .05]. Harmful involvement independently predicted worse HbA1c (β = 0.08), and worsening HbA1c over three months (β = 0.12, both p < 0.05).Conclusion: The Family and Friend Involvement in Adults’ Diabetes (FIAD) is a reliable and valid measure assessing family/friend involvement in adults’ T2D.Practice implications: FIAD use can inform interventions to improve social contexts in which adults manage diabetes.