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1.
BMJ Open ; 12(4): e059308, 2022 04 20.
Artigo em Inglês | MEDLINE | ID: mdl-35443963

RESUMO

OBJECTIVE: To identify key observable indicators of person-centred care (PCC) from interviews with patients, relatives and professionals with experience of receiving or working with PCC. DESIGN: A qualitative interview study using deductive content analysis. SETTING: Primary and hospital care settings in Western Sweden. PARTICIPANTS: Twelve participants with extensive experience of receiving or working with PCC were interviewed: two patients, two patients representative with long-term conditions, one relative and informal carer, three registered nurses, one physician, two occupational therapists and one social worker/researcher. RESULTS: Nine observable indicators were identified and subsumed under three predetermined categories: initiating, working and safeguarding the partnership. The first category comprised three subcategories: welcoming, interested and courteous reception; agreeing on structure and aims of the conversation; and eliciting patients' wishes for involvement of significant others. The second category comprised four subcategories: attentive, empathic and encouraging manner; promoting mutual understanding; promoting patient engagement; and encouraging and friendly body language. The last category consisted of two subcategories: collaboration and transparency in documentation and verifying that patient's and professional's views, goals and wants are correctly documented. CONCLUSION: Our results underline the need for health professionals to actively and conscientiously convey to patients their interest in and respect for the patient as a person and their willingness to collaborate as partners in their care from the very outset of the interaction. Non-verbal behaviours were seen to play a major role in shaping patients' impressions of health professionals. Given that patients' first impressions were considered to impact the content, course and outcomes of the interaction, more research attention should be given to their implications for the effective delivery of PCC.


Assuntos
Pessoal de Saúde , Assistência Centrada no Paciente , Comunicação , Humanos , Assistência Centrada no Paciente/métodos , Pesquisa Qualitativa , Autocuidado
2.
Scand J Caring Sci ; 35(3): 833-843, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32781485

RESUMO

BACKGROUND: There are difficulties in clinical assessment of patients' health, and there is a need for evaluating instruments that measures self-rated health over time and that are based on the patient's own experiences of their health situation. AIM: To describe the trajectory of self-rated health given in a retrospective health-line and its correspondence with the ratings of health given at six different time points during 2 years following a first breast cancer surgery. DESIGNS AND METHODS: An explorative prospective cohort study presented according to the STROBE guideline. At six time points, 459 women (26-63 years) completed assessments of self-rated health during 2 years following a first breast cancer surgery. Subsequently, the women retrospectively rated health month by month over the two years by means of a health-line. The women were included consecutively in 2007-2009, last data collection was performed in 2012. Statistical analyses were used to compare the health-line with previous ratings. RESULTS: Most women (74-88%) rated their health as good, very good or excellent at all six time points. Health-line ratings were somewhat lower than the ratings made at the actual time-point; however, the illustrated trajectories back in time followed the same patterns as the women had reported during the two years. The lowest ratings of self-rated health were reported at four months after surgery. The retrospective illustrations varied greatly, and poorer health was reported by women undergoing chemotherapy, with lower education and who reported more life events. CONCLUSIONS: Even if the retrospective ratings by the health-line were somewhat lower than the ratings at the actual time-point, the health-line captures the health trajectory. The individual graphic illustration by means of a health-line may serve as a basis for assessment and support patient health narratives. The findings indicate that life event, lower education and chemotherapy influence concurrent and retrospective self-assessment of health.


Assuntos
Neoplasias da Mama , Neoplasias da Mama/cirurgia , Feminino , Humanos , Estudos Prospectivos , Estudos Retrospectivos , Autoavaliação (Psicologia) , Inquéritos e Questionários
3.
Int J Qual Stud Health Well-being ; 15(1): 1848025, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33256567

RESUMO

Purpose: To explore and analyse the experience of work situation and professional role for midwives at a labour ward pre and post the implementation of a midwifery model of care (MiMo). Methods: A simultaneous mixed method was used. The qualitative core component departed from three focus group interviews (n = 16 midwives). Secondary inductive and deductive content analysis was performed using an unconstrained matrix to make a corresponding comparison of the different time points. The supplemental component was a quantitative survey about the work situation (n = 58). Results: The qualitative results pre the implementation showed three categories: Balance between Women and Organization, Midwives-Diverse as both Profession and Person, and Strained Work Situation. Post the intervention they transformed to Balance between Midwifery and Organization, Midwives-An Adaptable Profession, Strained Work Situation, and a new category Ability to concretize midwifery was found. There were no significant differences in the measures of work situation in the quantitative analyses. Conclusions: The synthesized findings based on the qualitative part show that MiMo has a potential to strengthen the professional role and midwifery practice. As such, MiMo has the capability to offer benefits to the labour wards with additional considerations.


Assuntos
Atitude do Pessoal de Saúde , Tocologia , Papel Profissional/psicologia , Local de Trabalho/psicologia , Humanos , Entrevistas como Assunto , Estresse Ocupacional/psicologia , Pesquisa Qualitativa , Sexismo/psicologia
4.
Int J Nurs Stud ; 109: 103634, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32531569

RESUMO

BACKGROUND: Direct observation is a common assessment strategy in health education and training, in which trainees are observed and assessed while undertaking authentic patient care and clinical activities. A variety of direct observation tools have been developed for assessing competency in delivering person-centred care (PCC), yet to our knowledge no review of such tools exists. OBJECTIVE: To review and evaluate direct observation tools developed to assess health professionals' competency in delivering PCC. DESIGN: State-of-the-art review DATA SOURCES: Electronic literature searches were conducted in PubMed, ERIC, CINAHL, and Web of Science for English-language articles describing the development and testing of direct observation tools for assessing PCC published until March 2017. REVIEW METHODS: Three authors independently assessed the records for eligibility. Duplicates were removed and articles were excluded that were irrelevant based on title and/or abstract. All remaining articles were read in full text. A data extraction form was developed to cover and extract information about the tools. The articles were examined for any conceptual or theoretical frameworks underlying tool development and coverage of recognized PCC dimensions was evaluated against a standard framework. The psychometric performance of the tools was obtained directly from the original articles. RESULT: 16 tools were identified: five assessed PCC holistically and 11 assessed PCC within specific skill domains. Conceptual/theoretical underpinnings of the tools were generally unclear. Coverage of PCC domains varied markedly between tools. Most tools reported assessments of inter-rater reliability, internal consistency reliability and concurrent validity; however, intra-rater reliability, content and construct validity were rarely reported. Predictive and discriminant validity were not assessed. CONCLUSION: Differences in scope, coverage and content of the tools likely reflect the complexity of PCC and lack of consensus in defining this concept. Although all may serve formative purposes, evidence supporting their use in summative evaluations is limited. Patients were not involved in the development of any tool, which seems intrinsically paradoxical given the aims of PCC. The tools may be useful for providing trainee feedback; however, rigorously tested and patient-derived tools are needed for high-stakes use.


Assuntos
Pessoal de Saúde , Assistência Centrada no Paciente , Humanos , Psicometria , Reprodutibilidade dos Testes
5.
Disabil Rehabil ; 41(7): 840-846, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29228839

RESUMO

PURPOSE: Fatigue is a symptom in patients with chronic gastrointestinal (GI) and liver diseases. Different instruments have been developed to assess the severity of fatigue and the 40-item Fatigue Impact Scale (FIS) is among the most widely used. Shorter versions of FIS include the 21-item Modified Fatigue Impact Scale (MFIS), and an eight-item version for everyday use. The study aimed to assess construct validity, reliability, and sufficiency of the raw score of the original FIS with 40 items, and examine the sufficiency of the 21 items from the Modified scale and the eight items of the Daily Fatigue Impact Scale (D-FIS), all of which are embedded in the 40-item scale. METHODS: Patients with chronic GI or liver disease (n = 354) completed the FIS with 40 items. The majority (57%) was under the age of 55 years and approximately half were females (48%). Various item sets of FIS were derived which showed fit to the Rasch model. RESULTS: Local dependency and multidimensionality in FIS and the 21-item Modified scale were resolved with a testlet solution but the D-FIS showed local dependency and multidimensionality and differential item functioning (DIF) still remained. Two new item sets fulfilling unidimensionality and no DIF are suggested, one with 15 items and a six-item scale for daily use. The transformation table shows score-interval scale estimates for all these item sets. CONCLUSIONS: Both the FIS and the Modified scale can be used to measure fatigue albeit requiring some adjustment for DIF. The eight-item D-FIS is more problematic, and its summed score is not valid. Alternative 15- and 6-item versions presented in this paper can offer valid summed scores, and the transformation table allows transformation of raw scores and comparisons across all versions. Implications for rehabilitation The Fatigue Impact Scale and the Modified Fatigue Impact Scale can be used to measure fatigue after adjustments for differential item functioning. Alternative 15- and 6-item versions of Fatigue Impact Scale offer valid summed scores. The summed score for the Daily Fatigue Impact Scale is not valid. A transformation table with raw scores and Rasch transformed interval scale metric makes it possible to compare scores derived from the Fatigue Impact Scale, the Modified Fatigue Impact Scale and the proposed 15- and 6-item versions of Fatigue Impact Scale for research and/or clinical use.


Assuntos
Doenças do Sistema Digestório , Fadiga , Avaliação de Sintomas/métodos , Adulto , Doenças do Sistema Digestório/fisiopatologia , Doenças do Sistema Digestório/reabilitação , Fadiga/diagnóstico , Fadiga/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde/métodos , Pesquisa de Reabilitação/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários , Escala Visual Analógica
6.
PLoS One ; 13(8): e0203031, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30169539

RESUMO

PURPOSE: To evaluate the effects of person-centred support via telephone in two chronically ill patient groups, chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF). METHOD: 221 patients ≥ 50 years with COPD and/or CHF were randomized to usual care vs. usual care plus a person-centred telephone-support intervention and followed for six months. Patients in the intervention group were telephoned by a registered nurse initially to co-create a person-centred health plan with the patient and subsequently to discuss and evaluate the plan. The primary outcome measure was a composite score comprising General Self-Efficacy (GSE), re-hospitalization and death. Patients were classified as deteriorated if GSE had decreased by ≥ 5 points, or if they had been re-admitted to hospital for unscheduled reasons related to COPD and/or CHF or if they had died. RESULTS: At six-month follow-up no difference in the composite score was found between the two study groups (57.6%, n = 68 vs. 46.6%, n = 48; OR = 1.6, 95% CI: 0.9-2.7; P = 0.102) in the intention-to-treat analysis (n = 221); however, significantly more patients in the control group showed a clinically important decrease in GSE (≥ 5 units) (22.9%, n = 27 vs. 9.7%, n = 10; OR = 2.8, 95% CI: 1.3-6.0; P = 0.011). There were 49 clinical events (14 deaths, 35 re-admissions) in the control group and 41 in the intervention group (9 deaths, 32 re-admissions). Per-protocol analysis (n = 202) of the composite score showed that more patients deteriorated in the control group than in the intervention group (57.6%, n = 68 vs. 42.9%, n = 36; OR = 1.8, 95% CI 1.0-3.2; P = 0.039). CONCLUSION: Person-centred support via telephone mitigates worsening self-efficacy without increasing the risk of clinical events in chronically ill patients with CHF and/or COPD. This indicates that a patient-healthcare professional partnership may be established without the need for face-to-face consultations, even in vulnerable patient groups. TRIAL REGISTRATION: ISRCTN.com ISRCTN55562827.


Assuntos
Insuficiência Cardíaca/terapia , Assistência Centrada no Paciente , Doença Pulmonar Obstrutiva Crônica/terapia , Telemedicina , Idoso , Doença Crônica/psicologia , Feminino , Seguimentos , Insuficiência Cardíaca/mortalidade , Insuficiência Cardíaca/psicologia , Humanos , Masculino , Readmissão do Paciente , Assistência Centrada no Paciente/métodos , Doença Pulmonar Obstrutiva Crônica/mortalidade , Doença Pulmonar Obstrutiva Crônica/psicologia , Autoeficácia , Telefone , Resultado do Tratamento
7.
BMJ Open ; 8(8): e020849, 2018 08 23.
Artigo em Inglês | MEDLINE | ID: mdl-30139897

RESUMO

OBJECTIVES: To explore relationships between patients' self-monitoring of blood pressure (BP) and their concurrent self-reports of medication intake, well-being, stress, physical activity and symptoms. DESIGN: This study is a secondary analysis of a prospective study exploring the 8-week effectiveness of a mobile phone-based self-management support system for patients with hypertension. SETTING: Four primary healthcare centres situated in urban and suburban communities in Sweden. PARTICIPANTS: 50 patients undergoing treatment for hypertension. PRIMARY AND SECONDARY OUTCOME MEASURES: Associations between systolic (SBP) and diastolic blood pressure (DBP) and 10 self-report lifestyle-related variables were analysed using linear mixed effects modelling. RESULTS: Medication intake, better well-being, less stress and greater physical activity were associated variously with lower same-day SBP and DBP. The single strongest association was found between medication intake and SBP, where failure to take medications was associated with an estimated 7.44 mm Hg higher SBP. To a lesser degree, medication intake was also associated with DBP, where DBP was 4.70 mm Hg higher in cases where medications were not taken. Well-being and stress were consistently associated with SBP and DBP, whereas physical activity was associated with only SBP. None of the symptoms-dizziness, headache, restlessness, fatigue or palpitations-were significantly associated with BP. CONCLUSIONS: Our findings that BP was associated with patients' BP management behaviours and experiences of well-being and stress, but not symptoms suggest that enabling persons with hypertension to monitor and track their BP in relation to medication intake, physical activity, well-being, stress and symptoms may be a fruitful way to help them gain first-hand understanding of the importance of adherence and persistence to treatment recommendations. TRIAL REGISTRATION NUMBER: NCT01510301; Pre-results.


Assuntos
Telefone Celular , Hipertensão/terapia , Autogestão , Adulto , Idoso , Idoso de 80 Anos ou mais , Anti-Hipertensivos/uso terapêutico , Estudos de Coortes , Diástole/fisiologia , Exercício Físico/fisiologia , Feminino , Humanos , Hipertensão/fisiopatologia , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Atenção Primária à Saúde , Estresse Psicológico/fisiopatologia , Estresse Psicológico/terapia , Suécia , Sístole/fisiologia
8.
Int J Cardiol ; 257: 46-49, 2018 04 15.
Artigo em Inglês | MEDLINE | ID: mdl-29422265

RESUMO

AIMS: Despite the widespread use of percutaneous closure of patent foramen ovale (PFO) in patients after a cryptogenic stroke, little is known about its impact on health-related quality of life (HRQoL). The aim of this study was to assess HRQoL in these patients compared to PFO patients not considered candidates for percutaneous closure, and to a normal population. METHODS AND RESULTS: A total of 402 patients with cryptogenic stroke or transient ischaemic attack (TIA) who had been referred to our center for PFO closure were invited to a long-term clinical follow-up (mean follow-up 5.5 years; range 3-13 years). HRQoL was assessed using the SF-36 Health Survey and data were compared with an age- and gender-matched reference group from the Swedish SF-36 normative database. Fifteen patients had died and 43 did not answer the SF-36. Of the remaining 344 patients, 208 had undergone PFO closure, and 136 had not. The closure group and reference group reported similar HRQoL levels. However, the non-closure group showed significantly lower HRQoL in role limitation - physical, vitality, general health, mental health (p < 0.05) and social functioning (p = 0.05) than the reference group and also had significantly lower scores than the closure group, correcting for age differences, on physical functioning, role limitation - physical, vitality and general health (p < 0.05). CONCLUSIONS: Non-closure patients had lower HRQoL than their counterparts in the normal population and the closure group. Percutaneous PFO closure is associated with a favorable quality of life.


Assuntos
Forame Oval Patente/cirurgia , Ataque Isquêmico Transitório/cirurgia , Qualidade de Vida , Acidente Vascular Cerebral/cirurgia , Adulto , Idoso , Feminino , Seguimentos , Forame Oval Patente/epidemiologia , Forame Oval Patente/psicologia , Humanos , Ataque Isquêmico Transitório/epidemiologia , Ataque Isquêmico Transitório/psicologia , Masculino , Pessoa de Meia-Idade , Período Pós-Operatório , Qualidade de Vida/psicologia , Estudos Retrospectivos , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/psicologia , Suécia/epidemiologia
9.
Spinal Cord ; 56(6): 614-620, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29367656

RESUMO

STUDY DESIGN: Qualitative method, semi-structured interviews. OBJECTIVES: The aims of this study were to explore the meaning of patient participation from the perspective of staff members working with spinal cord injury (SCI) rehabilitation, and what they saw as requisites for and constraints to patient participation. SETTING: Swedish spinal injury unit. METHODS: Interviews with 13 staff members at a spinal unit were conducted individually and analyzed by means of content analysis. RESULTS: One category describing patient participation emerged from the interviews: Patient - a team member. Four categories were extracted as requisites: Communication; information and knowledge; routines; respecting the patient as a unique person; and an open climate. Three categories of constraints were identified: Understaffing and new staff members; patients' inability to grasp information; and structures and fragmented responsibilities. CONCLUSIONS: The informants were unanimous in stating that the patient is an integral and natural member of the rehabilitation team. Recognizing the person with SCI as a team member acknowledges and endorses the patient as a person with capabilities to participate in his or her rehabilitation. The patient as a person also means that he or she has unique needs and preferences, which the staff members must accommodate. This is also fundamental in a person-centered approach. Therefore, the viewpoints of the informants may be useful for other settings to enhance person centeredness and patient participation.


Assuntos
Atitude do Pessoal de Saúde , Pessoal de Saúde/psicologia , Participação do Paciente , Traumatismos da Medula Espinal/reabilitação , Adulto , Comunicação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Participação do Paciente/psicologia , Assistência Centrada no Paciente , Relações Profissional-Paciente , Pesquisa Qualitativa , Traumatismos da Medula Espinal/psicologia
10.
Epilepsy Behav ; 75: 196-202, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28881321

RESUMO

The objective was to compare parental health-related quality of life (HRQoL), anxiety, and depression at baseline and 2years after epilepsy surgery in a population-based series of children and young people who underwent surgery between 1995 and 1999 and to compare with population norms. Fifty mothers and 44 fathers of 50 children and young people (age: 1-20years) completed the Medical Outcome Study 36-item Short Form Health Survey (SF-36) and Hospital Anxiety and Depression (HAD) scale at baseline and at follow-up. Changes in SF-36 and HAD scores between baseline and follow-up were compared using Wilcoxon signed rank test. Scores on the SF-36 were compared with a reference sample from the Swedish population using the Mann Whitney U test. Factors associated with changes in SF-36 and HAD scores were analyzed using regression analysis. On the SF-36, the Physical Component Summary (PCS) scores were not significantly different between baseline and follow-up for mothers (p=0.177) or fathers (p=0.054). Mental Component Summary (MCS) scores improved significantly for mothers (p=0.008) and fathers (p<0.001). Mothers' baseline scores on seven of eight SF-36 domains were significantly lower than reference values. Scores at follow-up improved on these seven domains, but on three domains (primarily mental health domains), scores remained significantly lower than reference values. Fathers' baseline scores on four of eight SF-36 domains were significantly lower than reference values, and scores at follow-up remained significantly lower on the four primarily mental health domains. The proportions of mothers and fathers classified as HAD-A and HAD-D cases decreased at follow-up but did not reach statistical significance. Child epilepsy variables were in the main not associated with parental outcomes, but a greater reduction in AEDs was associated with a greater reduction in PCS scores. Parents of young people/children with seizure-free outcome were significantly more likely to have a reduction in depression scores than parents of young people/children with continued seizures. Many aspects of HRQoL and emotional wellbeing improved at 2-year follow-up for parents after epilepsy surgery on their children. There is a need to comprehensively identify factors associated with changes in parental HRQoL and emotional wellbeing to provide adequate support.


Assuntos
Epilepsia/psicologia , Epilepsia/cirurgia , Pais/psicologia , Qualidade de Vida , Adulto , Ansiedade/etiologia , Depressão/etiologia , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida/psicologia , Análise de Regressão , Projetos de Pesquisa , Suécia
11.
Epilepsia ; 58(10): 1706-1715, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28836662

RESUMO

OBJECTIVE: To evaluate health-related quality of life (HRQOL) and emotional well-being in resective epilepsy surgery and nonoperated patients at long-term follow-up. METHODS: This is a prospective cohort study where patients undergoing presurgical work-up during 1995-1998 completed the Short-Form Health Survey (SF-36) and the Hospital Anxiety and Depression scale (HAD) at baseline, and 2 and 14 years after resective surgery or presurgical evaluation (nonoperated patients). SF-36 scores were compared to a normative population. Proportions of patients reaching HRQOL changes of minimum clinically important difference (MCID) were calculated. RESULTS: At 14-year follow-up, operated patients scored equal to or better than the normative sample on all SF-36 domains except Social Functioning and Mental Health. Physical component summary (PCS) was better and mental component summary (MCS) was worse than for the normative sample. Nonoperated patients scored worse than the normative sample on five of eight domains, and on PCS and MCS. Change in seizure status from 2 to 14 years did not affect PCS or MCS means. Improvement reaching MCID from baseline to long-term was seen in 50% (PCS) and 47% (MCS) of operated and in 33% (PCS) and 38% (MCS) of nonoperated patients. Worsening was seen in 18% (PCS) and 22% (MCS) of operated and in 38% (PCS) and 38% (MCS) of nonoperated patients. Differences between groups were nonsignificant. HAD scores did not differ between groups, and the numbers of possible or probable cases were low. Patient satisfaction with surgery was higher in operated seizure-free patients. Only 5% of all operated patients considered surgery not to be overall beneficial. SIGNIFICANCE: At the group level, HRQOL was stable 14 years after surgery compared to after 2 years. Social Functioning and Mental Health were still below, but other domains were similar to the normative sample. Individual patterns did not follow seizure outcome changes, indicating that multiple factors are important for long-term HRQOL.


Assuntos
Epilepsia/cirurgia , Nível de Saúde , Saúde Mental , Qualidade de Vida/psicologia , Adolescente , Adulto , Ansiedade/psicologia , Estudos de Casos e Controles , Estudos de Coortes , Depressão/psicologia , Epilepsia/fisiopatologia , Epilepsia/psicologia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Estudos Prospectivos , Participação Social , Adulto Jovem
12.
Plast Reconstr Surg Glob Open ; 5(6): e1316, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28740762

RESUMO

BACKGROUND: Studies have confirmed that breast reconstruction is beneficial to improve health-related quality of life (HR-QoL) in breast cancer patients. Our aim was to compare 4 different methods of breast reconstruction on patient satisfaction and HR-QoL using both general and specific patient-reported outcome instruments. METHODS: Retrospectively, 459 patients who underwent breast reconstruction with a deep inferior epigastric artery perforator (DIEP) flap, latissimus dorsi flap, lateral thoracodorsal flap, or expander with secondary implant and who had responded to the questionnaires were enrolled. Questionnaire answers, together with demographic and follow-up data, were statistically analyzed and compared between groups. Short-Form 36 Health Survey (SF-36) results were also compared with those from a sample of 930 age-matched women from the Swedish population. RESULTS: There were slight differences in the SF-36 results but no significant differences in Psychological General Well-Being Index and EuroQoL-5 Dimension Questionnaire results between groups. Analysis of Breast-Q showed that the DIEP group had significantly higher score on the scale satisfaction with breast, significantly higher score in satisfaction with outcome than the lateral thoracodorsal flap (P = 0.014) and EXP groups (P = 0.024). There were no significant differences in most of the domains of the HR-QoL instruments. The higher satisfaction with breasts and outcome in the DIEP group is interesting, considering the higher complication rates associated with this reconstruction method. CONCLUSIONS: Patients who underwent breast reconstruction with a DIEP flap were more satisfied with their reconstructed breast and outcome than the other 3 groups. Breast reconstruction centers should make DIEP reconstruction widely available to patients after mastectomy.

13.
J Patient Rep Outcomes ; 2(1): 4, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29757320

RESUMO

BACKGROUND: The Short Form 36-Item Survey is one of the most commonly used instruments for assessing health-related quality of life. Two identical versions of the original instrument are currently available: the public domain, license free RAND-36 and the commercial SF-36.RAND-36 is not available in Swedish. The purpose of this study was threefold: to translate and culturally adapt the RAND-36 into Swedish; to evaluate its reliability and responsiveness using Svensson's method for paired ordered categorical data; and to assess the usability of an electronic version of the questionnaire.The translation process included forward and backward translations and reconciliation. Test-retest reliability was examined during a period of two-weeks in 84 patients undergoing dialysis for chronic kidney disease. Responsiveness was examined in 97 patients before and 2 months after a cardiac rehabilitation program. Usability tests and cognitive debriefing of the electronic questionnaire were carried out with 18 patients. RESULTS: The Swedish translation of the RAND-36 was conceptually equivalent to the English version. Test-retest reliability was supported by non-significant relative position (RP) values among dialysis patients for all RAND-36 subscales (range - 0.02 to 0.10; all confidence intervals (CI) included zero). Responsiveness was demonstrated by significant improvements in RP values among cardiac rehabilitation patients for all subscales (range 0.22-0.36; lower limits of all CI > 0.1) except two subscales (General health, RP -0.02; CI -0.13 to 0.10; and Role functioning/emotional, RP 0.03; CI -0.09 to 0.16). In cardiac rehabilitation patients, sizable individual variation (RV > 0.2) was also shown for the Pain, Energy/fatigue and Social functioning subscales.The electronic version of RAND-36 was found easy and intuitive to use. CONCLUSIONS: Our results provide evidence supporting the reliability and responsiveness of the newly translated Swedish RAND-36 and the user-friendliness of the electronic version. Svensson's method for paired ordinal data was able to characterize not only the direction and size of differences among the patients' responses at different time points but also variations in response patterns within groups. The method is therefore, besides being suitable for ordinal data, also an important and novel tool for gaining insights into patients' response patterns to treatment or interventions, thus informing individualized care.

14.
BMC Med Res Methodol ; 16: 62, 2016 05 26.
Artigo em Inglês | MEDLINE | ID: mdl-27387456

RESUMO

BACKGROUND: Fatigue is the most frequent symptom reported by patients with chronic illnesses. As a subjective experience, fatigue is commonly assessed with patient-reported outcome measures (PROMs). Currently, there are more than 40 generic and disease-specific PROMs for assessing fatigue in use today. The interpretation of changes in PROM scores may be enhanced by estimates of the so-called minimal important difference (MID). MIDs are not fixed attributes of PROMs but rather vary in relation to estimation method, clinical and demographic characteristics of the study group, etc. The purpose of this paper is to compile published MIDs for fatigue PROMs, spanning diagnostic/patient groups and estimation methods, and to provide information relevant for appraising their appropriateness for use in specific clinical trials and in monitoring fatigue in defined patient groups in routine clinical practice. METHODS: A systematic search of three databases (Scopus, CINAHL and Cochrane) for studies published between January 2000 to April 2015 using fatigue and variations of the term MID, e.g. MCID, MIC, etc. Two authors screened search hits and extracted data independently. Data regarding MIDs, anchors used and study designs were compiled in tables. RESULTS: Included studies (n = 41) reported 60 studies or substudies estimating MID for 28 fatigue scales, subscales or single item measures in a variety of diagnostic groups and study designs. All studies used anchor-based methods, 21/60 measures also included distribution-based methods and 17/60 used triangulation of methods. Both similarities and dissimilarities were seen within the MIDs. CONCLUSIONS: Magnitudes of published MIDs for fatigue PROMs vary considerably. Information about the derivation of fatigue MIDs is needed to evaluate their applicability and suitability for use in clinical practice and research.


Assuntos
Fadiga/diagnóstico , Fadiga/terapia , Indicadores Básicos de Saúde , Humanos , Medidas de Resultados Relatados pelo Paciente , Resultado do Tratamento
16.
Eur J Cardiovasc Nurs ; 15(2): 186-94, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26701344

RESUMO

BACKGROUND: Person-centred care (PCC) aims to engage patients as active partners in their care and treatment to improve the management of their illness. Self-efficacy is an important concept and outcome in PCC as it refers to a patient's belief in their capability to manage the events that affect their lives. Recovery after acute coronary syndrome (ACS) is demanding and a PCC approach may promote self-efficacy and thereby facilitate recovery. AIM: The purpose of this study was to evaluate whether a PCC intervention was able to improve self-efficacy after hospitalization for ACS. METHODS: In a randomized controlled trial, patients <75 years of age and hospitalized for ACS were assigned to either a usual care group or a PCC intervention group. Self-efficacy was assessed at baseline and up to six months after discharge using the Swedish Cardiac Self-Efficacy Scale (S-CSES), which consists of three dimensions: control symptoms, control illness and maintain functioning. RESULTS: In total, 177 patients were included in the study: 93 in the usual care group and 84 in the PCC group. At the one-month follow-up the PCC group had improved significantly more (p=0.049) on the control symptoms dimension (mean change 0.81; SD 3.5 versus mean change -0.20; SD 3.0). No difference between groups was seen at the six-month follow-up in any of the S-CSES dimensions. CONCLUSIONS: Our results indicate that PCC added to usual care promotes and hastens the development of patients' confidence in their ability to manage symptoms during recovery after ACS. This underlines the importance of initiating and establishing partnerships between patients and health care professionals as early as possible after ACS.


Assuntos
Síndrome Coronariana Aguda/psicologia , Síndrome Coronariana Aguda/terapia , Assistência Centrada no Paciente , Autoeficácia , Idoso , Feminino , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Recuperação de Função Fisiológica , Suécia , Resultado do Tratamento
17.
J Clin Hypertens (Greenwich) ; 18(2): 101-8, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26456490

RESUMO

This explorative, longitudinal study evaluated the effect of the daily use of a mobile phone-based self-management support system for hypertension in reducing blood pressure (BP) among 50 primary care patients with hypertension over 8 weeks. The self-management system comprises modules for (1) self-reports of BP, pulse, lifestyle, symptoms, and well-being; (2) delivery of reminders and encouragements; and (3) graphical feedback of self-reports. Daily use of the support system significantly reduced BP (systolic BP -7 mm Hg, diastolic BP -4.9 mm Hg) between baseline and week 8, with daily improvements leveling off as the study progressed. Three homogenous subsets of patients were identified who, despite different initial BP levels, showed similar decreases in BP during the study, indicating that patients benefited irrespective of baseline BP. In showing significant reductions in BP, our results suggest that the self-management support system may be a useful tool in clinical practice to help patients self-manage their hypertension.


Assuntos
Anti-Hipertensivos/uso terapêutico , Monitorização Ambulatorial da Pressão Arterial , Telefone Celular , Hipertensão , Aplicativos Móveis , Qualidade de Vida , Monitorização Ambulatorial da Pressão Arterial/instrumentação , Monitorização Ambulatorial da Pressão Arterial/métodos , Feminino , Humanos , Hipertensão/diagnóstico , Hipertensão/tratamento farmacológico , Hipertensão/psicologia , Estudos Longitudinais , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Autocuidado/métodos , Suécia , Resultado do Tratamento
18.
Scand J Caring Sci ; 30(4): 687-694, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26463897

RESUMO

The purpose of this study was to gain more knowledge and a deeper understanding of experiences of persons living with psychological distress who seek help in primary care. Psychological distress is a state of emotional suffering associated with stressors and demands that are difficult to cope with in daily life. The lack of effective care for and difficulty in identifying psychological distress is frustrating for patients and health professionals alike. The aim was therefore to gain more knowledge about the experience of living with psychological distress. Twelve persons (nine women and three men) aged 23-51 years were interviewed. Analyses were based on a phenomenological hermeneutic method and indicated that psychological distress may be seen as an imbalance (incongruence) between the self and the ideal self, which slowly breaks down a person's self-esteem. This imbalance was described in three dimensions: Struggling to cope with everyday life, Feeling inferior to others and Losing one's grip on life. It seems to be associated with a gradual depletion of existential capacities and lead to dissatisfaction, suffering, poor self-esteem and lack of control. As psychological distress may be a forerunner to mental, physical and emotional exhaustion, there is a need to initiate preventive or early interventions to avoid mental, physical and emotional chaos in such patients. Patients' with psychological distress need to be involved in a person-centred salutogenic dialogue with health professionals to become aware of and strengthen their own capacities to regain health and well-being.


Assuntos
Atenção Primária à Saúde , Estresse Psicológico , Adaptação Psicológica , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
20.
Epilepsy Behav ; 53: 10-4, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26515152

RESUMO

PURPOSE: The purpose of this study was to assess and compare health-related quality of life (HRQoL) and emotional well-being in mothers and fathers of children with drug-resistant epilepsy, referred for presurgical evaluation in Sweden. METHODS: Mothers (n=117) and fathers (n=102) of 122 children (0-18 years) completed the generic 36-item Short Form Health Survey (SF-36) and the Hospital Anxiety and Depression Scale (HADS). Mothers' and fathers' SF-36 scores were compared with age-adjusted Swedish population values using the independent t-tests. Differences in the proportions of mothers vs. fathers classified as 'noncases' or 'possible/probable' clinical cases of anxiety (HADS-A) and depression (HADS-D), respectively, were assessed with the chi-square test. Parents' HADS scores were also compared using independent t-tests. RESULTS: Mothers had significantly lower scores compared with norms on 6 of the 8 SF-36 domains (p<0.01), while fathers had significantly lower scores on 4 of the domains (p<0.01). Mothers had significantly lower scores than fathers on 4 of the SF-36 domains (p<0.05). Significantly more mothers than fathers scored below the population mean for the SF-36 Mental Component Summary score. A significantly larger proportion of mothers than fathers had 'possible/probable' anxiety (52% vs. 38%) but not depression (30% vs. 22%). Mothers had significantly worse scores than fathers on HADS-A (p<0.01) but not on HADS-D. CONCLUSION: Mothers and fathers of children with drug-resistant epilepsy have diminished HRQoL compared with population norms. Symptoms of anxiety appear to be more common than symptoms of depression. Mothers experienced higher levels of anxiety, but not depression, than fathers and scored lower than fathers on vitality, mental health, and Mental Component Summary of the SF-36. There is a need to identify contributory factors and interventions to ameliorate these difficulties.


Assuntos
Ansiedade/diagnóstico , Depressão/diagnóstico , Epilepsia/diagnóstico , Pais/psicologia , Qualidade de Vida/psicologia , Adulto , Ansiedade/psicologia , Criança , Pré-Escolar , Depressão/psicologia , Epilepsia/psicologia , Pai/psicologia , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Saúde Mental , Mães/psicologia , Escalas de Graduação Psiquiátrica , Inquéritos e Questionários , Suécia
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