A Methodology for Mapping the Patient Journey for Noncommunicable Diseases in Low- and Middle-Income Countries

Bharatan, Tanaya; Duddi, Sita Ratna Devi; Huang, Pai-Hui; Javed, Afzal; Jeffers, Barrett W.; Lansberg, Peter; Sidhu, Kaveri; Subramaniam, Kannan

doi:10.2147/jhl.s288966

Cited by 24 publications

(30 citation statements)

References 50 publications

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“…Although the idea of patient journey maps are gaining traction [ 17 – 19 ], there are no standard approaches to performing the steps of the mapping exercise and it has been suggested that the lack of consistent methodology may contribute to the low adoption rates in healthcare [ 36 , 37 ]. It is important that our mapping process was patient driven.…”

Section: Discussionmentioning

confidence: 99%

Development of a patient journey map for people living with cervical dystonia

Benson¹,

Albanese

Bhatia³

et al. 2022

Orphanet J Rare Dis

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Background Patient journey maps are increasingly used as a tool that enables healthcare providers to refine their service provision to best meet patient needs. We developed a cervical dystonia patient journey map (CDPJM) that describes the holistic patient experience from pre-diagnosis through to long-term treatment. Methods The CDPJM was developed in 2 stages; a patient survey (open questions and multichoice) of 15 patients with CD was conducted to inform the design of the CDPJM, which was then refined and validated by an expert-patient focus group. Results Qualitative analysis of the patient survey supported five key stages of the patient journey: symptom onset, diagnosis and therapeutic relationship with healthcare professionals, initiation of care for CD, start of CD treatment, and living with treated CD. Following symptom onset, survey respondents described having multiple visits to their family doctor who prescribed strong pain killers and muscle relaxants and referred their patient to up to 10 different specialists for diagnosis. Over half (53.3%) of respondents had received ≥ 1 misdiagnosis. Respondents reported relief at having a diagnosis but a lack of understanding of the prognosis and treatment options; 46.7% said their neurologist did not spend enough time addressing their concerns. Survey respondents reported using a variety of alternative sources of information, including the internet (86.7%), self-help groups (66.7%) and information leaflets provided by health care professionals (60.0%). While botulinum toxin (BoNT) was consistently discussed as the main treatment option, some neurologists also mentioned physiotherapy, counselling, and other complementary approaches. However, patients were often left to seek complementary services themselves. Patients reported a ‘rollercoaster’ of relief with BoNT treatment with symptoms (and subsequent impact on daily life) returning towards the end of an injection cycle. “When BoNT works well I can return to an almost normal life … when the injections stop working so well, I have to rest more and avoid going to work and experience life restrictions.” Conclusions We present the first patient journey map for CD that can be used to guide local service mapping and to compare current provision with what patients say they want and need.

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Section: Discussionmentioning

confidence: 99%

Development of a patient journey map for people living with cervical dystonia

Benson¹,

Albanese

Bhatia³

et al. 2022

Orphanet J Rare Dis

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“…After duplicate removal, first-level screening was done by reviewer 1 based on relevance. Non-relevant records were excluded during level-2 screening by reviewer 2 based on exclusion criteria, that included age < 18 years, case reports, letter to editors, articles with no patient journey data (prevalence, awareness, screening, diagnosis, treatment, adherence, and control), written in a non-English language, articles with non-representative study sample or study from other than Brazil region [ 18 ]. Also, this review excluded studies with specific groups of patients (elderly, pregnant women, co-morbidities).…”

Section: Methodsmentioning

confidence: 99%

Challenges faced by patients with dyslipidemia and systemic arterial hypertension in Brazil: a design of the patient journey

Faria-Neto

Yarleque²,

Vieira³

et al. 2022

BMC Cardiovasc Disord

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Background and objective Non-communicable diseases like systemic arterial hypertension (SAH) and dyslipidemia are poorly studied in terms of patient journey aspects. This semi-systematic review provides evidence synthesis for the management of SAH and dyslipidemia in Brazil and also discusses challenges faced by patients at the local level along with a suggested care approach by local experts. Methods A semi-systematic review using both structured literature databases (Embase and Medline) and unstructured scientific records (WHO, IPD, MOH and Google) on hypertension and dyslipidemia in the English language from 2010 to 2019 was performed by reviewers. After two-level screening based on pre-defined criteria, patient journey touchpoints and prevalence information were extracted from the included articles. Data gaps were bridged through the insights of local experts. Results Prevalence of hypertension and dyslipidemia in Brazil were 23% and 40.8%, respectively. Awareness of dyslipidemia was found in a larger proportion (58.1%) than in SAH (22.2%). Similarly, screening for hypertension (97%) and dyslipidemia (55.4%) were found to be effective, while treatment was (62.9%) and (30.0%) for hypertension and dyslipidemia, respectively. Conclusion There were important gaps on patient awareness and treatment of dyslipidemia and hypertension. Limited patient education, regional disease distribution, and treatment allocation, along with limited resources for diagnosis and treatment are the key challenges.

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“…The MAPS methodology followed in our review has been described in detail elsewhere. [ 24 25 ] Preliminary literature search for LBP with a neuropathic component in Saudi Arabia yielded only a few articles. Due to the paucity of data, a separate review article on LBP with a neuropathic component was deemed unwarranted.…”

Section: Methodsmentioning

confidence: 99%

“…[ 24 ] Consequently, the Mapping the Patient Journey Towards Actionable Beyond the Pill Solutions (MAPS) initiative has been conceptualized by Upjohn– A legacy of Pfizer Research Development and Medical that helps in managing diseases through patient-centric and locally relevant solutions. [ 25 ] Quantitative mapping of available evidence and identification of data gaps in terms of disease prevalence and patient management stages would enable the government and health-care authorities to implement relevant health-care policies, fund and prioritize specific research, and sponsor patient awareness programs in Saudi Arabia. This can be achieved through generation of evidence maps that involves evidence synthesis through a systematic search of a large field and identification of gaps in available data and/or future research needs.…”

Section: Introductionmentioning

confidence: 99%