What are the important factors in health-related quality of life for people with aphasia? A systematic review

Objective: To determine factors associated with or predictive of poor health-related quality of life (HRQL) in people with aphasia poststroke. Better understanding of these factors can allow better targeting of rehabilitation programs. Data Sources: Electronic databases, covering medical (eg, Medline, Excerpta Medica Database, Evidence-Based Medicine Reviews, Cumulative Index to Nursing and Allied Health Literature, Ovid, Allied and Complementary Medicine Database) and social sciences (eg, PsycINFO) were searched and key experts were approached. Study Selection: Studies including specific information on the HRQL of people with aphasia poststroke using validated HRQL measures or established ways of analyzing qualitative data were included. Two reviewers independently screened studies against the eligibility criteria. Data Extraction: This was undertaken independently by 2 reviewers. Discrepancies were resolved by consensus. Quantitative studies were assessed for quality with Counsell and Dennis' critical appraisal tool for systematic review of prognostic models in acute stroke; qualitative studies with the Critical Appraisal Skills Program tool for qualitative research. Data Synthesis: Fourteen research reports met the eligibility criteria. Because of their high heterogeneity, the data synthesis was narrative. The evidence is not strong enough to determine the main predictors of HRQL in people with aphasia. Still, emotional distress/depression, severity of aphasia and communication disability, other medical problems, activity limitations, and aspects of social network and support were important factors. Conclusions: Emotional distress, aphasia severity, communication and activity limitations, other medical problems, and social factors affect HRQL. Stroke HRQL studies need to include people with aphasia and report separately on them, in order to determine the main predictors of their HRQL and to identify what interventions can best address them

Psychological health and life situation in spouses of stroke patients

About 30,000 people in Sweden are affected by stroke each year. The effect on physical functioning, and also consequences such as depression and aphasia, are likely to affect not only the life of the patient, but also the life of the spouse and family. The aims of the thesis were to identify factors of importance for the life situation of spouses of stroke patients and to evaluate the effect of a support- and education programme on the spouses psychological health. The participants in this thesis were gathered from three different populations. Participants in Paper I were significant others of depressed stroke patients. The aim of this study was to describe the life situation among significant others to patients with post stroke depression (PSD) and to identify associations between the life situation of the significant other in relation to patient characteristics. In Paper II the participants were significant others of depressed or aphasic stroke patients. The aim was to describe and compare predictors of the life situation of significant others of depressed or aphasic stroke patients. In Papers III and IV the participants were spouses of stroke patients consecutively approached and invited to participate in a randomised controlled trial (RCT) intervention programme. The aim of Paper III was to explore if a nurse-led support- and education programme for spouses of persons affected by stroke improved the psychological health in the spouses, and the aim of Paper IV was to identify predictors of psychological health and to examine if these predictors change over time in spouses of stroke patients during the first year after stroke. A second aim was to identify gender differences in psychological health among the spouses. Perceived need of assistance was the only common predictor of the life situation of the significant other of both significant others of depressed and aphasic stroke patients. Amongst the aphasic patients, perceived personality change and living with the patient were factors that had a negative effect on the life situation of the significant other. General well-being and presence of illness in the spouse were the most prominent predictors of psychological health, throughout the first year. Significant others of stroke patients participating in a support- and education programme had significantly more knowledge about stroke after 12 months compared to the controls. No difference in psychological health was found. However, the 5 participants appreciated the group sessions and the attention from the health professionals. Significant others of male stroke patients reported a more negative impact on their life situation, than did significant others of female stroke patients. There was a significant relation between the patient s level of depression and physical function (ADL); those with less impaired ADL had more major depression than those with more impaired ADL. This thesis highlights the importance of assessing the situation of spouses of stroke patients. The perception of the patient s need of assistance is an important factor affecting the life situation of spouses of both depressed and aphasic stroke patients. An intervention programme increases the spouses knowledge about stroke, but a combination of group meetings and individualised support may be necessary in order to gain effect also on the psychological health. Assessments of the spouses perception as well as of the patients factual situation may identify spouses at risk. Enhancing the psychological health and supporting those in need may enable the patient to continue to live at home without risking the health of the spouse

Striatal hand deformities in Parkinson's disease - hand surgical perspectives

BackgroundThe knowledge about striatal hand deformities (SHD) in Parkinson’s disease (PD), has recently increased but need more attention due to their early impact on dexterity. The focus of clinical studies has been on the staging of SHD severity and neurological features. However, a hand surgical perspective has not been considered.ObjectivesOur purpose was to examine SHD in patients with PD using hand surgical assessmentmethods and the recommended staging of SHD.MethodsIn this observational study, a specialist in neurological physiotherapy examined 100 consecutive PD patients and identified 35 with suspected SHD, who were thenexamined by two hand surgeons. Their hands were clinically evaluated for severity of SHD, according to a previous proposed staging, focusing on metacarpophalangeal (MCP) joint flexion, presence of intrinsic and extrinsic tightness, as well as other hand deformities.ResultsThree kinds of deformities were identified among 35 included patients: surgicaldiagnoses unrelated to PD (n=5), SHD (n=23), and PD related hand deformities with increased extrinsic tightness (n=10); three of these 10 patients had also contralateral SHD, thus are included in SHD group. In addition to previously described MCP joint flexion, swan neck deformity and z-thumb deformity, we found in most hands finger “clefting”, abduction of the little finger and/or an increased intrinsic tightness, indicating pathology of intrinsic muscles of the hand involved in SHD.ConclusionsSHD diagnosed with a modified staging method, including features of intrinsic andextrinsic hand deformities, should be considered in PD to implement early and more accurate treatmen

Gait and balance among people with de novo vs. mild to moderate Parkinson’s disease

We have investigated how a de novo cohort of people with Parkinson’s disease (PD) differs in terms of balance and gait function as well as frequency of near falls and falls in comparison to a cohort with mild to moderate PD that has been medicated for several years. Preliminary results (Table 1) showed that people with de novo PD have balance and gait impairments and that some have also experienced near falls and falls. On the contrary, the cohort with more advanced disease has significantly fewer motor symptoms, as shown in the UPDRS motor score, compared to those newly diagnosed. This is probably related to successful symptomatic medication in the more advanced cohort. Despite less motor symptoms, those with a more advanced disease performed significantly worse on the balance-demanding tests (i.e., Timed Up and Go, Tandem Gait) and reported more near falls and falls. These results are consistent with previous studies reporting that dopaminergic medication improves motor symptoms, but has less effects on mobility and balance in PD. This indicates a need for balance-promoting efforts from an early stage of the disease

Health care professionals’ experiences and enactment of person-centered care at a multidisciplinary outpatient specialty clinic

Gudrun Evén,1 Jonas Spaak,1 Magnus von Arbin,1 Åsa Franzén-Dahlin,1 Terese Stenfors2 1Department of Clinical Sciences, Karolinska Institutet, Stockholm, Sweden; 2Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden Introduction: Person-centered care (PCC) appears particularly suitable for patients with complex diseases and in multidisciplinary care. However, previous research tends to focus on each profession and condition separately.Purpose: We studied how health care professionals (HCPs) understand PCC, and whether their clinical practice is aligned with their theoretical understanding, when starting clinical practice at a novel multidisciplinary clinic. Methods: In total, 16 semi-structured interviews with HCPs and 31 non-participatory observations of outpatient meetings and other activities at the clinic such as team meetings were conducted at a multidisciplinary, integrated outpatient clinic in Sweden. All patients had simultaneous diabetes mellitus, chronic kidney disease and established cardiovascular disease. The clinic employed a PCC approach. Data were analyzed using an inductive thematic approach. Results: Two key findings emerged. First, PCC requires a holistic view of the patient at all times during care, with everything focused on the patient. This requires that the HCPs know the patient well enough as an individual to be able to tailor the care together with them. Second, working with a PCC philosophy leads to transformed roles for HCPs in patient meetings, with more active involvement by the patient and often also their next of kin. The observations, in comparison with the interviews, showed that not all HCPs applied their views on PCC in patient meetings. Observations showed that some patient meetings were less person-centered than others, potentially due to stress or lack of time. Conclusion: PCC require HCPs to have a holistic view of the patients and a deeper understanding of their situation, as individuals. Working with PCC also leads to a more coaching, supportive role of the HCPs. Keywords: person-centered care, multidisciplinary, qualitative research, interviews, observations, thematic analysis, health care professionals, cardiology, nephrology, endocrinolog