“Home is where the patient is”: a qualitative analysis of a patient-centred model of care for multi-drug resistant tuberculosis

Horter, Shona; Stringer, Beverley; Reynolds, Lucy; Shoaib, Muhammad; Kasozi, Samuel; Casas, Esther C.; Verputten, Meggy; Cros, Philipp du

doi:10.1186/1472-6963-14-81

Cited by 55 publications

(52 citation statements)

References 16 publications

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“…[20] Much can also be learned from HIV and tuberculosis treatment models that have utilized outreach clinics and home visits to improve treatment compliance and patient satisfaction. [21, 22] A clear gap in published research in pediatric oncology is the impact of an educational program for parents on the rate of treatment abandonment. Our study demonstrated that an overwhelming percentage of parents did not understand their child’s treatment plan or the importance of returning for further therapy once the child appeared to be cured.…”

Section: Discussionmentioning

confidence: 99%

Risk factors for abandonment of Wilms tumor therapy in Kenya

Libes

Oruko

Abdallah

et al. 2014

Pediatric Blood & Cancer

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Background Survival from Wilms tumor (WT) in sub-Saharan Africa remains dismal as a result of on-therapy mortality and treatment abandonment. Review of patients diagnosed from 2008–2011 in our Kenyan Wilms Tumor Registry showed a loss to follow up (LTFU) rate approaching 50 percent. The purpose of this study was to trace those LTFU, estimate the survival rate, and identify risk factors for treatment abandonment. Procedure We administered a comprehensive survey to parents of patients with WT at the two largest referral hospitals in Kenya to identify barriers to care. We also telephoned families who had abandoned care to determine vital status and identify risk factors for treatment abandonment. Results Of 136 registered patients, 77 were confirmed dead (56.7%), 38 remained alive (27.9%), and the vital status of 21 patients remains unknown (15.4%). After contacting 33 of the patients who either abandoned curative treatment (n=34) or did not attend off-therapy visits (n=20), the best estimate of 2-year overall survival of patients with WT in Kenya approaches 36%. Sixty-three percent of parents misunderstood treatment plans and 55% encountered financial barriers. When asked how to increase comfort with the child’s treatment, 27% of parents volunteered improving inefficient services and 26% volunteered reducing drug-unavailability. Conclusions Treatment abandonment remains a significant problem contributing to increased mortality from WT in developing countries. This multi-center survey identified the barriers to treatment completion from the parental perspective to be lack of education about WT and treatment, financial constraints, need for quality improvement, and drug-unavailability.

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Section: Discussionmentioning

confidence: 99%

Risk factors for abandonment of Wilms tumor therapy in Kenya

Libes

Oruko

Abdallah

et al. 2014

Pediatric Blood & Cancer

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“…Questions were refined during the course of the interviews. A semi-structured interview schedule allowed participants to speak freely, yet allowed for exploration of the specific issues that were intended to be explored [34]. A written informed consent form was signed by each participant before starting the interview.…”

Section: Methodsmentioning

confidence: 99%

Exploring the Health Care Challenges and Health Care Needs of Arabic-Speaking Immigrants with Cardiovascular Disease in Australia

et al. 2019

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The Arabic-speaking immigrant group, which makes up the fourth largest language group in Australia, has a high prevalence of cardiovascular disease. The objective of this study was to explore the health care challenges and needs of Arabic-speaking immigrants with cardiovascular disease (CVD), using a comparative approach with English-speaking patients with CVD as the comparable group. Methods: Participants were recruited from community settings in Melbourne, Australia. Face-to-face semi-structured individual interviews were conducted at the recruitment sites. All interviews were audio-taped, transcribed, and coded thematically. Results: 29 participants with CVD were recruited; 15 Arabic-speaking and 14 English-speaking. Arabic-speaking immigrants, and to a lesser extent English-speaking patients with CVD may have specific health care challenges and needs. Arabic-speaking immigrants’ health care needs include: effective health care provider (HCP)-patient communication, accessible care, participation in decision-making, and empowerment. English-speaking participants viewed these needs as important for CVD management. However, only a few English-speaking participants cited these needs as unmet health care needs. Conclusion: This study suggests that Arabic-speaking immigrants with CVD may have unique needs including the need for privacy, effective HCP-patient communication that takes into account patients’ limited English proficiency, and pharmacist-physician collaboration. Therefore, there may be a need to identify a health care model that can address these patients’ health care challenges and needs. This, in turn, may improve their disease management and health outcomes.

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“…Home-based treatment also improves patient wellbeing [34] and treatment outcome [35,36]. Studies of DS-TB found that home-based treatment did not increase infection or disease among household contacts [37].…”

Section: Timely Commencement Of Effective Treatmentmentioning

confidence: 99%

Preventing the spread of multidrug-resistant tuberculosis and protecting contacts of infectious cases

Fox

Schaaf

Mandalakas

et al. 2017

Clinical Microbiology and Infection

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192 words Word count: 2,928References: 65 in main text, 77 including tables. Conflicts of interest:None to declare 2 Abstract Prevention of multidrug (MDR) and extensively drug-resistant tuberculosis (XDR-TB) is a top priority for global TB control, given the need to limit epidemic spread and considering the high cost, toxicity and poor treatment outcomes with available therapies. We performed a systematic literature review to evaluate the evidence for strategies to reduce MDR/XDR-TB transmission and disease progression.Rapid detection and timely initiation of effective treatment is critical to rendering MDR/XDR-TB cases non-infectious. The scale-up of rapid molecular testing has transformed the capacity of high-incidence settings to identify and treat MDR/XDR-TB patients. Optimised infection control measures in hospitals and clinics are critical to protect other patients and healthcare workers, while creative measures to reduce transmission within community hotspots require consideration. Targeted screening of high-risk communities may enhance early case-detection and limit the spread of MDR/XDR-TB. Among infected contacts, preventive therapy promises to reduce the risk of disease progression. This is supported by observational cohort studies, but randomised trials are urgently needed to confirm these observations and guide policy formulation.Substantial investment in MDR/XDR-TB prevention and care will be critical if the ambitious global goal of TB elimination is to be realised.3

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“Home is where the patient is”: a qualitative analysis of a patient-centred model of care for multi-drug resistant tuberculosis

Cited by 55 publications

References 16 publications

Risk factors for abandonment of Wilms tumor therapy in Kenya

Risk factors for abandonment of Wilms tumor therapy in Kenya

Exploring the Health Care Challenges and Health Care Needs of Arabic-Speaking Immigrants with Cardiovascular Disease in Australia

Preventing the spread of multidrug-resistant tuberculosis and protecting contacts of infectious cases

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