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1.
BMC Immunol ; 25(1): 18, 2024 02 20.
Artículo en Inglés | MEDLINE | ID: mdl-38378441

RESUMEN

BACKGROUND: Here, the perspective of patients with primary and secondary immunodeficiency receiving subcutaneous immunoglobulin (SCIg) via introductory smaller size pre-filled syringes (PFS) or vials were compared. METHODS: An online survey was conducted in Canada by the Association des Patients Immunodéficients du Québec (APIQ) (10/2020-03/2021). Survey questions included: reasons for choosing SCIg packaging and administration methods, training experiences, infusion characteristics, and switching methods. The survey captured structured patient-reported outcomes: treatment satisfaction and its sub-domains, symptom state, general health perception, and physical and mental function. Respondents using PFS were compared with vial users, overall and stratified by their administration method (pump or manual push). RESULTS: Of the 132 total respondents, 66 respondents used vials, with 38 using a pump and 28 using manual push. PFS (5 and 10 mL sizes) were being used by 120 respondents, with 38 using a pump and 82 using manual push. PFS users were associated with a 17% lower median (interquartile range) SCIg dose (10 [8, 12] vs. 12 [9, 16] g/week, respectively), a significantly shorter infusion preparation time (15 [10, 20] vs. 15 [10, 30] mins, respectively), and a trend for shorter length of infusion (60 [35, 90] vs. 70 [48, 90] mins, respectively) compared with those on vials. Patient-reported treatment satisfaction scores were overall similar between vial and PFS users (including on the domains of effectiveness and convenience), except for a higher score for vials over PFS on the domain of global satisfaction (p=0.02). CONCLUSIONS: Consistent with prescribing that reflects a recognition of less wastage, PFS users were associated with a significantly lower SCIg dose compared with vial users. PFS users were also associated with shorter pre-infusion times, reflecting simpler administration mechanics compared with vial users. Higher global satisfaction with treatment among vial users compared with PFS users was consistent with users being limited to smaller PFS size options in Canada during the study period. Patient experience on PFS is expected to improve with the introduction of larger PFS sizes. Overall, treatment satisfaction for SCIg remains consistently high with the introduction of PFS packaging compared with vials.


Asunto(s)
Inmunoglobulina G , Síndromes de Inmunodeficiencia , Humanos , Embalaje de Medicamentos , Infusiones Subcutáneas , Síndromes de Inmunodeficiencia/tratamiento farmacológico , Medición de Resultados Informados por el Paciente , Inmunoglobulinas Intravenosas/uso terapéutico
2.
J Clin Immunol ; 44(8): 169, 2024 Aug 05.
Artículo en Inglés | MEDLINE | ID: mdl-39098942

RESUMEN

BACKGROUND: Immunoglobulin G replacement therapy (IgRT), intravenous (IV) and subcutaneous (SC) routes, is pivotal in treatment of primary immunodeficiencies (PID). In recent years, facilitated subcutaneous immunoglobulin (fSCIG), a combination of rHuPH20 and 10% IgG has emerged as a delivery method to combine advantages of both IV and SC. METHOD: In an observational prospective cohort, we investigated patient experience with fSCIG in PID patients from 5 PID centers for up to 12 months. We assessed the efficacy and safety of this treatment with patient/caregiver- and physician-reported indicators. Additionally, we analyzed patient treatment satisfaction (TSQM-9) and quality of life (QoL). RESULTS: We enrolled 29 patients (22 pediatric and 7 adults; 14 females and 15 males; (median: 15, min-max: 2-40.9 years) who initiated fSCIG as IgRT-naive (n = 1), switched from conventional rapid-push 10% SCIG (n = 6) or IVIG (n = 22). Among the participants, 19 (65%) exhibited antibody deficiencies, 8 (27%) combined immunodeficiencies, and 2 (7%) immune dysregulations. Remarkably, targeted trough immunoglobulin G levels were achieved under all previous IgRTs as well as fSCIG. No severe systemic adverse drug reactions were documented, despite prevalent local (%86.45) and mild systemic (%26.45) adverse reactions were noted with fSCIG. Due to mild systemic symptoms, 2 patients switched from fSCIG to 10% SCIG. The patient satisfaction survey revealed a notable increase at 2-4th (p = 0.102); 5-8th (p = 0.006) and 9-12th (p < 0.001) months compared to the baseline. No significant trends were observed in QoL surveys. CONCLUSION: fSCIG demonstrates admissable tolerability and efficacy in managing PIDs in addition to notable increase of patients' drug satisfaction with IgRT. The identified benefits support the continuation of this therapy despite the local reactions.


Asunto(s)
Inmunoglobulina G , Inmunoglobulinas Intravenosas , Satisfacción del Paciente , Calidad de Vida , Humanos , Masculino , Femenino , Niño , Estudios Prospectivos , Adulto , Preescolar , Adolescente , Adulto Joven , Inmunoglobulinas Intravenosas/uso terapéutico , Inmunoglobulina G/uso terapéutico , Enfermedades de Inmunodeficiencia Primaria/terapia , Resultado del Tratamiento , Inyecciones Subcutáneas , Infusiones Subcutáneas , Síndromes de Inmunodeficiencia/terapia , Síndromes de Inmunodeficiencia/tratamiento farmacológico
3.
J Urol ; : 101097JU0000000000004169, 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39092698

RESUMEN

PURPOSE: There is a paucity of long-term objective and patient-reported outcomes after definitive perineal urethrostomy for complex urethral strictures. Our objective is to determine comprehensive long-term success of perineal urethrostomy with our 15-year experience at a reconstructive referral center. MATERIALS AND METHODS: Patients who underwent perineal urethrostomy between 2009 and 2023 were identified. A comprehensive long-term follow-up was conducted, evaluating both objective outcomes (retreatment-free survival) and subjective outcomes through the use of validated questionnaires. Additionally, to provide further context for our findings, we conducted a scoping review of all studies reporting outcomes following perineal urethrostomy. RESULTS: Among 76 patients, 55% had iatrogenic strictures, with 82% previously undergoing urethral interventions. At a median follow-up of 55 months, retreatment-free survival was 84%, with 16% of patients experiencing perineal urethrostomy recurrent stenosis. Patient-reported outcomes revealed a generally satisfactory voiding function (Urethral Stricture Surgery patient-reported outcome measure Lower Urinary Tract Symptoms score) and continence (International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form), with median scores of 4 (range 0-24) and 0 (range 0-21), but with bimodal distributions of sexual function scores (median International Index of Erectile Function-Erectile Function domain: 3.5; median Male Sexual Health Questionnaire-Ejaculation Scale: 21). Treatment satisfaction was very high with a median International Consultation on Incontinence Questionnaire-Satisfaction outcome score of 21 (range 0-24). The scoping review revealed varying success rates ranging from 51% to 95%, highlighting difficulties in comparison due to variable success definitions and patient case mix. CONCLUSIONS: Perineal urethrostomy provides effective treatment for complex anterior urethral strictures, with high patient satisfaction, preserved continence function, and favorable voiding outcomes. It presents a viable option for older and comorbid patients, especially after thorough counseling on expected outcomes and potential risks.

4.
BMC Cancer ; 24(1): 647, 2024 May 27.
Artículo en Inglés | MEDLINE | ID: mdl-38802773

RESUMEN

BACKGROUND: Patient satisfaction is an important indicator of the quality of healthcare. Pain is one of the most common symptoms among cancer patients that needs optimal treatment; rather, it compromises the quality of life of patients. OBJECTIVE: To assess the levels and associated factors of satisfaction with cancer pain treatment among adult patients at cancer centers found in Northern Ethiopia in 2023. METHODS: After obtaining ethical approval, a multi-center cross-sectional study was conducted at four cancer care centers in northern Ethiopia. The data were collected using an interviewer-administered structured questionnaire that included the Lubeck Medication Satisfaction Questionnaire (LMSQ). The severity of pain was assessed by a numerical rating scale from 0 to 10 with a pain score of 0 = no pain, 1-3 = mild pain, 4-6 = moderate pain, and 7-10 = severe pain Binary logistic regression analysis was employed, and the strength of association was described in an adjusted odds ratio with a 95% confidence interval. RESULT: A total of 397 cancer patients participated in this study, with a response rate of 98.3%. We found that 70.3% of patients were satisfied with their cancer pain treatment. Being married (AOR = 5.6, CI = 2.6-12, P < 0.001) and being single (never married) (AOR = 3.5, CI = 1.3-9.7, P = 0.017) as compared to divorced, receiving adequate pain management (AOR = 2.4, CI = 1.1-5.3, P = 0.03) as compared to those who didn't receive it, and having lower pain severity (AOR = 2.6, CI = 1.5-4.8, P < 0.001) as compared to those who had higher level of pain severity were found to be associated with satisfaction with cancer pain treatment. CONCLUSION: The majority of cancer patients were satisfied with cancer pain treatment. Being married, being single (never married), lower pain severity, and receiving adequate pain management were found to be associated with satisfaction with cancer pain treatment. It would be better to enhance the use of multimodal analgesia in combination with strong opioids to ensure adequate pain management and lower pain severity scores.


Asunto(s)
Dolor en Cáncer , Satisfacción del Paciente , Humanos , Estudios Transversales , Masculino , Femenino , Etiopía/epidemiología , Dolor en Cáncer/tratamiento farmacológico , Dolor en Cáncer/psicología , Persona de Mediana Edad , Adulto , Satisfacción del Paciente/estadística & datos numéricos , Manejo del Dolor/métodos , Encuestas y Cuestionarios , Calidad de Vida , Anciano , Neoplasias/complicaciones , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Adulto Joven , Dimensión del Dolor , Instituciones Oncológicas/estadística & datos numéricos , Adolescente
5.
Diabet Med ; 41(4): e15292, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38291604

RESUMEN

AIMS: In patients with breast cancer (BCa) and diabetes (DM), diabetes distress (DD) and treatment satisfaction (DTS) can influence BCa management and outcomes. We assessed the impact of implementing a personalized diabetes care model in patients with BCa. METHODS: Patients in active treatment or surveillance for BCa with an HbA1c > 53 mmol/mol (7%) or random blood glucose >11.1 mmol/L were included. Participants were offered continuous glucose monitoring (CGM), virtual care and a dedicated diabetes provider for 6 months. Primary outcomes included DD measured by the Diabetes Distress Survey (DDS) and DTS measured by the Diabetes Treatment Satisfaction Questionnaire (DTSQ). Questionnaires were conducted at 0, 3 and 6 months. RESULTS: Thirty-one women were enrolled (median age 61, IQR 49.0-69.0). Compared to baseline, the mean DDS score was lower at both 3 months (2.2 vs. 1.8 [n = 27], p = 0.004, SD = 0.70) and 6 months (2.3 vs. 1.8 [n = 23], p = 0.002, SD = 0.70). The mean DTSQ score was higher at 3 months (baseline: 20.5 vs. 3 months: 28.7 [n = 28], p < 0.001, SD = 9.2) and 6 months (baseline: 20.4 vs. 6 months: 30.0 [n = 26], p < 0.001, SD = 9.7). CONCLUSIONS: Personalized diabetes care models that emphasize remote management and optimize access for those with BCa may lower DD and improve DTS.


Asunto(s)
Neoplasias de la Mama , Diabetes Mellitus Tipo 1 , Diabetes Mellitus , Humanos , Femenino , Persona de Mediana Edad , Glucemia , Automonitorización de la Glucosa Sanguínea , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/terapia , Hemoglobina Glucada , Satisfacción Personal , Hipoglucemiantes
6.
Diabet Med ; 41(3): e15195, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37562414

RESUMEN

AIMS: To examine the psychometric properties of the Diabetes Management Experiences Questionnaire (DME-Q). Adapted from the validated Glucose Monitoring Experiences Questionnaire, the DME-Q captures satisfaction with diabetes management irrespective of treatment modalities. METHODS: The DME-Q was completed by adults with type 1 diabetes as part of a randomized controlled trial comparing hybrid closed loop (HCL) to standard therapy. Most psychometric properties were examined with pre-randomization data (n = 149); responsiveness was examined using baseline and 26-week follow-up data (n = 120). RESULTS: Pre-randomization, participants' mean age was 44 ± 12 years, 52% were women. HbA1c was 61 ± 11 mmol/mol (7.8 ± 1.0%), diabetes duration was 24 ± 12 years and 47% used an insulin pump prior to the trial. A forced three-factor analysis revealed three expected domains, that is, 'Convenience', 'Effectiveness' and 'Intrusiveness', and a forced one-factor solution was also satisfactory. Internal consistency reliability was strong for the three subscales ( α range = 0.74-0.84) and 'Total satisfaction' ( α = 0.85). Convergent validity was demonstrated with moderate correlations between DME-Q 'Total satisfaction' and diabetes distress (PAID: rs = -0.57) and treatment satisfaction (DTSQ; rs = 0.58). Divergent validity was demonstrated with a weak correlation with prospective/retrospective memory (PRMQ: rs = -0.16 and - 0.13 respectively). Responsiveness was demonstrated, as participants randomized to HCL had higher 'Effectiveness' and 'Total satisfaction' scores than those randomized to standard therapy. CONCLUSIONS: The 22-item DME-Q is a brief, acceptable, reliable measure with satisfactory structural and construct validity, which is responsive to intervention. The DME-Q is likely to be useful for evaluation of new pharmaceutical agents and technologies in research and clinical settings.


Asunto(s)
Diabetes Mellitus Tipo 1 , Adulto , Humanos , Femenino , Persona de Mediana Edad , Masculino , Diabetes Mellitus Tipo 1/tratamiento farmacológico , Automonitorización de la Glucosa Sanguínea , Satisfacción del Paciente , Psicometría , Reproducibilidad de los Resultados , Estudios Retrospectivos , Estudios Prospectivos , Glucemia , Encuestas y Cuestionarios
7.
Diabet Med ; 41(8): e15332, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38751219

RESUMEN

Diabetes is unique among chronic diseases because clinical outcomes are intimately tied to how the person living with diabetes reacts to and implements treatment recommendations. It is further characterised by widespread social stigma, judgement and paternalism. This physical, social and psychological burden collectively influences self-management behaviours. It is widely recognised that the individual's perspective about the impact of trying to manage the disease and the burden that self-management confers must be addressed to achieve optimal health outcomes. Standardised, rigorous assessment of mental and behavioural health status, in interaction with physical health outcomes is crucial to aid understanding of person-reported outcomes (PROs). Whilst tempting to conceptualise PROs as an issue of perceived quality of life (QoL), in fact health-related QoL is multi-dimensional and covers indicators of physical or functional health status, psychological and social well-being. This complexity is illuminated by the large number of person reported outcome measures (PROMs) that have been developed across multiple psychosocial domains. Often measures are used inappropriately or because they have been used in the scientific literature rather than based on methodological or outcome assessment rigour. Given the broad nature of psychosocial functioning/mental health, it is important to broadly define PROs that are evaluated in the context of therapeutic interventions, real-life and observational studies. This report summarises the central themes and lessons derived in the assessment and use of PROMs amongst adults with diabetes. Effective assessment of PROMs routinely in clinical research is crucial to understanding the true impact of any intervention. Selecting appropriate measures, relevant to the specific factors of PROs important in the research study will provide valuable data alongside physical health data.


Asunto(s)
Diabetes Mellitus , Medición de Resultados Informados por el Paciente , Calidad de Vida , Humanos , Diabetes Mellitus/terapia , Diabetes Mellitus/psicología , Adulto , Consenso , Estado de Salud
8.
BJU Int ; 2024 May 11.
Artículo en Inglés | MEDLINE | ID: mdl-38733321

RESUMEN

OBJECTIVE: To investigate long-term and patient-reported outcomes, including sexual function, in women undergoing urogenital fistula (UGF) repair, addressing the lack of such data in Western countries, where fistulas often result from iatrogenic causes. PATIENTS AND METHODS: We conducted a retrospective analysis at a tertiary referral centre (2010-2023), classifying fistulas based on World Health Organisation criteria and evaluating surgical approaches, aetiology, and characteristics. Both objective (fistula closure, reintervention rates) and subjective outcomes (validated questionnaires) were assessed. A scoping review of patient-reported outcome measures in UGF repair was also performed. RESULTS: The study included 50 patients: 17 (34%) underwent transvaginal and 33 (66%) transabdominal surgery. History of hysterectomy was present in 36 patients (72%). The median (interquartile range [IQR]) operating time was 130 (88-148) min. Fistula closure was achieved in 94% of cases at a median (IQR) follow-up of 50 (16-91) months and reached 100% after three redo fistula repairs. Seven patients (14%) underwent reinterventions for stress urinary incontinence after transvaginal repair (autologous fascial slings). Patient-reported outcomes showed median (IQR) scores on the International Consultation on Incontinence Questionnaire Female Lower Urinary Tract Symptoms Modules (ICIQ-FLUTS) of 5 (3-7) for filling symptoms, 1 (0-2) for voiding symptoms and 4.5 (1-9) for incontinence symptoms. The median (IQR) score on the ICIQ Female Sexual Matters Associated with Lower Urinary Tract Symptoms Module (ICIQ-FLUTSsex) was 3 (1-5). The median (IQR) ICIQ Satisfaction (ICIQ-S) outcome score and overall satisfaction with surgery item score was 22 (18.5-23.5) and 10 (8.5-10), respectively. Higher scores indicate higher symptom burden and treatment satisfaction, respectively. Our scoping review included 1784 women, revealing mixed aetiology and methodological and aetiological heterogeneity, thus complicating cross-study comparisons. CONCLUSIONS: Urogenital fistula repair at a specialised centre leads to excellent outcomes and high satisfaction. Patients with urethrovaginal fistulas are at increased risk of stress urinary incontinence, possibly due to the original trauma site of the fistula.

9.
BMC Neurol ; 24(1): 67, 2024 Feb 17.
Artículo en Inglés | MEDLINE | ID: mdl-38368338

RESUMEN

BACKGROUND: We aimed to describe the experience of a single neuromuscular center in Germany in treating adult spinal muscular atrophy (SMA) patients with risdiplam and to analyze motor function and treatment satisfaction during a follow-up period up to 20 months. METHODS: Fourteen patients with type 2 or 3 SMA (seven with SMA type 2, six with SMA type 3; age range: 18-51) were included. The Revised Upper Limb Module (RULM) and the Hammersmith Functional Motor Scale Expanded (HFMSE) were recorded at baseline and at follow-up (month 4, 8, 12, 16, 20). Treatment adverse events were collected at every follow-up visit. Patients' treatment satisfaction was assessed by the Treatment Satisfaction Questionnaire for Medication (TSQM). RESULTS: Half of the patients reached the 20-month follow-up. Based on the HFMSE score, no patients had clinically meaningful improvement. Twelve remained stable (92.3%), two showed transient clinically meaningful deterioration (15.4%) and one experienced lasting clinically meaningful deterioration (7.7%). Based on the RULM scores, seven patients were either stable or demonstrated clinically meaningful improvement (53.8%) and six showed clinically meaningful deterioration (46.2%). There was no treatment withdrawal during the follow-up. The most common adverse events were skin rash/increased skin sensitivity to sunlight (n = 3), diarrhea (n = 3), aphthous ulcer (n = 3) and abdominal pain (n = 2). Most patients stated to be at least "satisfied" with the medication. CONCLUSIONS: Risdiplam was well tolerated. Half of the patients remained stable or improved after risdiplam initiation. Larger and multicentric studies are needed to better understand the long-term effects of risdiplam in adult SMA.


Asunto(s)
Compuestos Azo , Atrofia Muscular Espinal , Pirimidinas , Atrofias Musculares Espinales de la Infancia , Adulto , Humanos , Adolescente , Adulto Joven , Persona de Mediana Edad , Dolor Abdominal , Alemania
10.
Future Oncol ; 20(12): 781-798, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38275149

RESUMEN

Aim: We aimed to determine Japanese metastatic castration resistant prostate cancer (CRPC) patients' Ra-223 treatment experience. Patients & methods: Patients answered the Cancer Therapy Satisfaction Questionnaire (CTSQ domains: Satisfaction with Therapy [SWT], Expectations of Therapy [ET], Feelings about Side Effects [FSE]), the Memorial Anxiety Scale for Prostate Cancer (MAX-PC) and the FACT-Bone Pain (FACT-BP) Questionnaire at baseline, during (vists 3 and 5) and after treatment (end of observation; EOO). Results: Data from 72 patients were included. Baseline median CTSQ scores SWT: 66.1 (IQR19.7), ET: 75.0 (IQR45), and FSE 68.8 (IQR 34.4) were unchanged during vists 3 and 5, but the SWT (-3.57 [IQR17.9]) and ET (-5.0 [IQR30]) decreased while FSE was unchanged (0.0 [IQR31.25]) at EOO. The median MAX-PC (18.0 [IQR 49]) score was unchanged (0.0, IQR 6) while the median FACT BP (54.0 [IQR13]) score decreased by -1.0 (IQR 8) at EOO. Conclusion: Japanese metastatic castration resistant prostate cancer patients' experience is stable during Ra-223 treatment.


What is this study about? We wanted to know the treatment experience with Radium-223 (Ra-223) among Japanese prostate cancer patients. Ra-223 is a radioactive molecule used for the treatment of metastatic castration resistant prostate cancer. We asked patients to answer different questionnaires on treatment satisfaction, anxiety and quality of life before, during, and after treatment with Ra-223. What were the results? Based on the patients' answers to our questionnaires, treatment satisfaction, anxiety and quality of life remain stable while the patients undergo treatment with Ra-223, but in some aspects may decline after treatment. What do the results mean? The results mean that patients' experience during Ra-223 treatment is stable but patients should share any concerns they have about their treatment with their doctors.


Asunto(s)
Neoplasias Óseas , Neoplasias de la Próstata Resistentes a la Castración , Radio (Elemento) , Masculino , Humanos , Neoplasias de la Próstata Resistentes a la Castración/radioterapia , Radio (Elemento)/efectos adversos , Japón/epidemiología , Calidad de Vida , Neoplasias Óseas/radioterapia
11.
Future Oncol ; : 1-18, 2024 May 17.
Artículo en Inglés | MEDLINE | ID: mdl-38861292

RESUMEN

Aim: To report treatment patterns and quality of life (QoL) in HER2-negative advanced breast cancer patients. Methods: Data were drawn from a cross-sectional survey in Europe and USA. Results: Hormone plus targeted therapy was the most frequent first-line (1L, 62%) and second-line (2L, 45%) treatment for HR+/HER2-patients. Chemotherapy was most frequent at third-line or greater (3L+, 39%) for HR+/HER2- patients, 2L (51%) and 3L+ (48%) for triple negative breast cancer (TNBC) patients. Time to progression was 13.8 (2L) and 11.0 (3L+) months for HR+/HER2- patients. No comparisons were observed for TNBC patients. EQ-5D-5L scores were highest in patients at 1L and lowest at 3L+. Conclusion: Reduced QoL and treatment response were reported in patients at later lines of therapy.


Breast cancer is the most common cancer in women. Differences in survival are seen depending on how widespread or advanced the cancer is, how many different treatments the patient has been given, as well as whether certain receptors on the tumor are present or absent. Many new treatments are available which can target these receptors. These treatments have improved survival in patients with advanced breast cancer, but other benefits for the patient are not always clear. In addition, differences between countries are possible as official guidance can vary. This study aimed to understand these issues, by asking physicians and their patients across Europe and USA for their views on quality of life and satisfaction with their treatments. We found that, in general, physicians prescribed treatments as recommended in the treatment guidelines. As breast cancer progressed and treatment stopped working, patients were switched on to different treatments. Survival, quality of life and treatment satisfaction were all worse in patients who had switched treatments. It appears that the patients lose confidence that their new treatment will work to improve their quality of life. We also saw differences in some of these outcomes between Europe and USA, which were likely due to differences in the treatment guidelines between countries. Both quality of life and treatment satisfaction are important for the well-being of patients with advanced breast cancer as they now live longer with these new treatments. This should be considered by physicians and taken into account for future work.

12.
Pituitary ; 2024 Jul 08.
Artículo en Inglés | MEDLINE | ID: mdl-38976180

RESUMEN

PURPOSE: Successful treatment outcomes of adults with hypothalamic-pituitary disorders necessitate the adoption of intricate self-management behaviors, yet current scales for evaluating treatment adherence and satisfaction are inadequate for this patient group. This research introduces a novel treatment adherence, satisfaction and knowledge questionnaire (TASK-Q) developed specifically to identify patients' unmet needs in better assessing and managing these disorders. METHODS: The study was conducted in three phases: (1) generating items and testing content validity, (2) refining these items through a pilot study, and (3) a main study evaluating the psychometric properties of the TASK-Q scale among 262 adults in a Pituitary Nurse-led Clinic, with 152 (58%) patients completing the questionnaire. RESULTS: Exploratory factor analysis was used to test the factor structure and construct validity of the TASK-Q, revealing a 22-item scale divided into Satisfaction and Knowledge (17 items) and Adherence (5 items) subscales, and exhibiting high internal consistency (Cronbach's α = 0.90). Significant correlations were identified between satisfaction and knowledge (r = 0.67, p < 0.001), satisfaction and adherence (r = 0.23, p = 0.005), and knowledge and adherence (r = 0.43, p < 0.001). Complex treatment regimens, like daily growth hormone injections and adjusting glucocorticoids during illness, negatively affected adherence (p < 0.001). CONCLUSION: The TASK-Q is a novel validated scale that can effectively evaluate patients' perspectives on adherence, knowledge and satisfaction. Our findings highlight the significant impact of Advanced Nurse Practitioners in improving patient self-management behaviors, which likely leads to better treatment outcomes for people with hypothalamic-pituitary disorders.

13.
J Infect Chemother ; 30(8): 746-751, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38365064

RESUMEN

BACKGROUND: Current antiretroviral therapy (ART) regimens are highly effective; therefore, to differentiate between various regimens, considering patient-reported outcomes is essential. This study aimed to assess patient satisfaction with their current ART regimens and investigate factors associated with the Human Immunodeficiency Virus Treatment Satisfaction Questionnaire: Status (HIVTSQs) score. METHODS: This cross-sectional, multicenter study was conducted in Japan between April and December 2021. Patient-reported satisfaction with ART was assessed using the Japanese version of the HIVTSQs. Binary logistic regression was used to identify factors associated with a low total HIVTSQs score. RESULTS: A total of 679 patients completed the questionnaire. The median total HIVTSQs score was 58 (interquartile range: 52.5-64). In the multivariable logistic regression analyses, a total HIVTSQs score in the lowest quartile (indicating low satisfaction) was independently associated with twice- or thrice-daily regimens compared with single-tablet, once-daily regimens (adjusted odds ratio: 2.80, 95% confidence interval: 1.29-6.06, p = 0.009) and depression (adjusted odds ratio: 2.30, 95% confidence interval: 1.32-4.01, p = 0.003). CONCLUSIONS: Satisfaction with the current ART regimen was high. Depression and twice- or thrice-daily ART regimen were associated with low HIVTSQ. Switching to a single-tablet, once-daily regimen may improve patient satisfaction in patients receiving twice- or thrice-daily regimens.


Asunto(s)
Infecciones por VIH , Satisfacción del Paciente , Humanos , Estudios Transversales , Masculino , Femenino , Japón , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/psicología , Persona de Mediana Edad , Satisfacción del Paciente/estadística & datos numéricos , Adulto , Encuestas y Cuestionarios , Fármacos Anti-VIH/uso terapéutico , Medición de Resultados Informados por el Paciente , Anciano
14.
BMC Geriatr ; 24(1): 447, 2024 May 22.
Artículo en Inglés | MEDLINE | ID: mdl-38778251

RESUMEN

BACKGROUND: The prevalence of medication nonadherence among Malaysian older adults is approximately 60%. However, there is a lack of studies assessing the factors associated with medication nonadherence among this population. This research aims to explore the association between medication regimen complexity (MRC), treatment satisfaction and medication adherence among Malaysian older adults. METHOD: A cross-sectional study was conducted in outpatient clinics of a teaching hospital in Pahang, Malaysia, between April 2023 and September 2023. MRC Index (MRCI), Treatment Satisfaction for Medication version II (TSQM v.II), and the Malaysian Medication Adherence Assessment Tool (MyMAAT) were used. Multivariate linear and logistic regression models were performed to test the factors affecting treatment satisfaction and medication adherence. Mediator analysis was implemented to assess the mediating role of treatment satisfaction. RESULT: The study involved 429 Malaysian older adult patients, with a prevalence of nonadherence of 51.0% (n = 219) and an MRCI mean score of 17.37 (SD = 7.07). The mean overall treatment satisfaction score was 73.91 (SD = 15.23). Multivariate logistic regression analysis expressed four significant predictors associated with nonadherence: MRC (AOR = 1.179, p = 0.002), overall treatment satisfaction (AOR = 0.847, p < 0.001), partially self-managed medication (AOR = 2.675, p = 0.011) and fully managed medication by family members/caregivers (AOR = 8.436, p = 0.004). Multivariate linear regression shows three predictors of treatment satisfaction: MRC (ß = -1.395, p < 0.001), Charlson Comorbidity Index (CCI) (ß = -0.746, p = 0.009) and self-managed medication (ß = 5.554, p = 0.006). Mediator analysis indicated that treatment satisfaction partially mediated the association between MRC and nonadherence. CONCLUSION: Nonadherence was quite prevalent among Malaysian older outpatients and was associated with regimen complexity, treatment satisfaction and patient dependence on others to manage their medications. Future studies should focus on interventions to control the factors that negatively affect patients' medication adherence.


Asunto(s)
Cumplimiento de la Medicación , Satisfacción del Paciente , Humanos , Malasia/epidemiología , Cumplimiento de la Medicación/psicología , Estudios Transversales , Masculino , Femenino , Anciano , Anciano de 80 o más Años , Persona de Mediana Edad
15.
Orthod Craniofac Res ; 27(4): 626-634, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38466047

RESUMEN

OBJECTIVE: To investigate the impact of various degrees of white spot lesions (WSLs) of maxillary anterior teeth on the aesthetic perception and treatment satisfaction among orthodontic patients, orthodontists and other dental specialists and to evaluate the differences among the three groups. METHODS: A total of 45 orthodontic patients (OP), 45 orthodontists (OR) and 45 other dental specialists (OS) were recruited. Subjective evaluations of perceived aesthetics and treatment satisfaction were performed towards eight digitally generated photographs of maxillary anterior teeth with incremental degrees of WSLs using a numerical visual analogue scale (VAS) from 0 to 100. Data were collected and analysed with descriptive statistics, repeated one-way analysis of variance and multivariable generalized estimating equations. RESULTS: A total of 135 valid questionnaires were collected. Regarding aesthetic scores for WSLs, OP gave more positive scores than OR and OS (p < .05) towards excessive white spot formation without colouration and were more tolerant than OR (p < .05) towards excessive white spot formation with slight colouration. The level of treatment satisfaction for slight to severe WSLs without cavitation was higher in OP than OR. Patients with higher education levels had more negative scores for aesthetic perception and treatment satisfaction (p < .05). Patients who brushed teeth more frequently scored lower in treatment satisfaction (p < .05). CONCLUSIONS: Orthodontists were the most critical when evaluating aesthetics and treatment satisfaction for slight to severe WSLs without cavitation. For orthodontic patients, better oral hygiene habits and higher education levels were associated with more critical attitudes towards WSLs.


Asunto(s)
Estética Dental , Ortodoncistas , Satisfacción del Paciente , Humanos , Femenino , Masculino , Ortodoncistas/psicología , Adulto , Encuestas y Cuestionarios , Adolescente , Especialidades Odontológicas , Adulto Joven , Ortodoncia
16.
Arch Gynecol Obstet ; 309(5): 2193-2202, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38141064

RESUMEN

PURPOSE: App-based treatment of urgency (UUI) and mixed (MUI) urinary incontinence has proved to be effective. To further improve treatment, it will be beneficial to analyze baseline and treatment-related factors that are associated with satisfaction. METHODS: A secondary analysis was conducted of data from a randomized controlled trial (RCT) assessing an app for UUI or MUI treatment, encompassing 98 women for whom there was long-term treatment satisfaction data. All participants completed a short-term (15 weeks) and a long-term (15 months) follow-up questionnaire after being given access to treatment. The outcome was a 3-item question on current treatment satisfaction at the long-term follow-up. Factors potentially associated with the outcome were analyzed using the chi-square test, Student's t test or logistic regression. RESULTS: At the long-term follow-up, 58% of the women were satisfied with the treatment. The most important baseline variable associated with satisfaction was incontinence-related quality of life (International Consultation on Incontinence Questionnaire (ICIQ) - Lower Urinary Tract Symptoms Quality of Life Module) (OR 0.91, 95% CI 0.58-0.97). Short-term follow-up variables associated with long-term treatment satisfaction were improvement in the ability to endure urgency (OR 4.33, 95% CI 1.43-13.12), and confidence in pelvic floor contraction ability (OR 2.67, 95% CI 1.04-6.82). CONCLUSION: App-based treatment for UUI and MUI may be an alternative first-line treatment that is satisfactory to many women over the long-term. Furthermore, short-term treatment that focuses on improving the ability to endure urgency, and confidence in pelvic floor contraction ability, can also be recommended for long-term satisfaction.


Asunto(s)
Incontinencia Urinaria de Esfuerzo , Incontinencia Urinaria , Femenino , Humanos , Resultado del Tratamiento , Incontinencia Urinaria de Urgencia/terapia , Incontinencia Urinaria/terapia , Calidad de Vida , Satisfacción Personal
17.
Psychol Health Med ; 29(1): 163-173, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-37822059

RESUMEN

Treating chronic illness requires ongoing patient-provider cooperation, but individual differences in patients' negative perceptions of care can undermine this cooperation. Research suggests people high on borderline personality disorder (BPD) features may react negatively to and comply less with mental health and medical treatment. This might be particularly problematic in chronic pain treatment, where BPD features are over-represented and the dysregulation typifying BPD likely undermines consistent care. In a sample of 147 chronic pain patients, we investigated whether higher levels of BPD features - both in general and by specific facets - predicted worse perceptions of treatment and lower patient-reported compliance with treatment recommendations. Participants higher (vs. lower) on borderline features viewed treatment more negatively but did not report complying less with recommendations. We found evidence that this may reflect the unstable relationships facet of BPD. Our results indicate that, consistent with other treatment settings, BPD features may undermine care for chronic pain. Furthermore, our results highlight the importance of collaborative provider-patient relationships and patient agreement with the treatment of chronic pain, particularly among individuals higher on BPD features.


Asunto(s)
Trastorno de Personalidad Limítrofe , Dolor Crónico , Humanos , Dolor Crónico/terapia , Dolor Crónico/psicología , Trastorno de Personalidad Limítrofe/terapia , Trastorno de Personalidad Limítrofe/complicaciones , Trastorno de Personalidad Limítrofe/psicología , Enfermedad Crónica , Manejo del Dolor , Personalidad
18.
J Dtsch Dermatol Ges ; 2024 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-39171774

RESUMEN

BACKGROUND: Actinic keratoses (AK) are increasing in incidence and represent the most common (pre-)cancerous lesion in the fair-skinned population, with a high unmet medical need. In order to increase treatment adherence, it is very important to assess patients' therapy-related evaluations of different treatment options. PATIENTS AND METHODS: 100 patients with AK who were treated with at least two different treatment options were included. They rated their therapies using the Treatment Satisfaction Questionnaire for Medication (TSQM, maximum 100 points per category) and a Likert scale (LS, 1  =  very satisfied; 6  =  not satisfied). Patients were also asked about their needs in terms of treatment goal, cost, type, duration, and location of treatment. RESULTS: 81% of the study participants were male and on average 74 years old. 95% had field cancerization. Eight frequently used therapy procedures were evaluated by the patients (surgery, cryotherapy, various topical agents, photodynamic therapy). The TSQM satisfaction scores ranged from 78.47 ± 16.07 (surgical procedures) to 53.03 ± 22.13 (diclofenac-HA). Statistically significant differences between the procedures were only found in the area of efficacy. Side effects were classified as low. Low recurrence rate and safe removal were the most important treatment goals (LS: 1.18 ± 0.44 and 1.27 ± 0.53, respectively). CONCLUSIONS: Understanding patient preferences is essential for adherence and is therefore of great importance for the success of AK therapy. Personalized approaches should be considered in the choice of therapy.

19.
Actas Dermosifiliogr ; 2024 Jun 08.
Artículo en Inglés, Español | MEDLINE | ID: mdl-38857843

RESUMEN

BACKGROUND: Patient-reported outcomes (PROs) are outcomes evaluated by patients based on their perception of their disease and treatment. OBJECTIVES: Determine antipsoriatic treatment-related adherence, quality of life (QoL) and satisfaction. MATERIALS AND METHODS: We conducted an observational cross-sectional, prospective, and single-center study in which PROs surveys were conducted on adherence (Morisky-Green [MG] test), treatment satisfaction (Spanish Questionnaire of Treatment Satisfaction in Psoriasis [CESTEP]) and QoL (Skindex-29 and DLQI). Additional variables include: PASI, BSA. STATISTICAL ANALYSIS: Jamovi®2.3.26. RESULTS: A total of 100 surveys were conducted. Based on the MG questionnaire, we found that 75% (75/100) of patients were adherent vs 94% (94/100) from the dispensation records. Regarding CESTEP, a mean score of 7.4±7.7 (close to maximum satisfaction 0) was obtained, while DLQI yielded a score of 2.6±4.6 (indicating a small effect on QoL), and SKINDEX-29 a score of 14.6±15.4 (68% indicating mild (< 5) or very mild (6-17) impact according to Nijsten et al.). Based on CESTEP a p.Rho Spearman value of 0.338 (p=0.004) was obtained in relation to PASI when the study was conducted with a BSA of 0.255 (p=0.050), DLQI results of 0.508 (p <0.001) and Skindex-29 results of 0.397(p <0.001). At the time of the study, the correlation matrix between DLQI result and PASI was 0.365 (p=0.002) with a BSA of 0.347 (p=0.007). Skindex-29 results with PASI were 0.380 (p=0.001) and with BSA, 0.295 (p=0.022). CONCLUSIONS: Patients on therapy exhibit a good QoL, high adherence and satisfaction with their treatment. A significant correlation was seen among satisfaction, QoL, and PASI-BSA at the time of the study.

20.
BMC Neurol ; 23(1): 147, 2023 Apr 10.
Artículo en Inglés | MEDLINE | ID: mdl-37038104

RESUMEN

BACKGROUND: Real-world evidence on experience and satisfaction of ofatumumab as a treatment option for relapsing multiple sclerosis (RMS) is limited. OBJECTIVE: To present cumulative responses from a questionnaire related to first-hand experience of treating physicians on handling and convenience of ofatumumab therapy along with concerns related to COVID-19. METHODS: PERITIA was a multicentre survey conducted to collect responses from the ASCLEPIOS I/II trial investigators from Europe via an online questionnaire. RESULTS: Forty-six physicians (Germany, n = 14; Spain, n = 12; Portugal, n = 10; Italy, n = 10) completed the survey. Overall, 43% of the physicians considered the benefit-risk ratio of ofatumumab as very good. Over 93% were in favour of ofatumumab self-administration at home and the majority (83%) believed it to be completely true that self-administration of ofatumumab eases the burden for patients in terms of time. All investigators would like to potentially use anti-CD20 therapy as a long-term strategy. Even during the COVID-19 pandemic, physicians were in favour of a self-administration of MS therapy at home over other anti-CD20 therapy infusions. CONCLUSION: European neurologists who were part of this survey considered the benefit-risk-ratio of ofatumumab as favourable and the monthly self-administered subcutaneous injections offering convenience for patients in the clinical practice.


Asunto(s)
Anticuerpos Monoclonales , COVID-19 , Humanos , Anticuerpos Monoclonales/uso terapéutico , Pandemias , Europa (Continente)/epidemiología , Satisfacción Personal , Encuestas y Cuestionarios
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