The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review

Giusti, Alessandra; Nkhoma, Kennedy; Petrus, Ruwayda; Petersen, Inge; Gwyther, Liz; Farrant, Lindsay; Venkatapuram, Sridhar; Harding, Richard

doi:10.1136/bmjgh-2020-003330

Cited by 61 publications

(58 citation statements)

References 54 publications

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“…This reflects the global movement towards personcentered care for illness in general. A body of evidence, including studies of PLHIV, exists to underpin the concept and practice, which is largely, but not exclusively, from high-income coutries 26 . Person-centered healthcare must value the social networks of patients, promote quality of life, and reform structurally to improve patients' experience interacting with the healthcare system, including respect for and protection of human rights.…”

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confidence: 99%

Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV

et al. 2021

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Health systems have improved their abilities to identify, diagnose, treat and, increasingly, achieve viral suppression among people living with HIV (PLHIV). Despite these advances, a higher burden of multimorbidity and poorer health-related quality of life are reported by many PLHIV in comparison to people without HIV. Stigma and discrimination further exacerbate these poor outcomes. A global multidisciplinary group of HIV experts developed a consensus statement identifying key issues that health systems must address in order to move beyond the HIV field’s longtime emphasis on viral suppression to instead deliver integrated, person-centered healthcare for PLHIV throughout their lives.

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confidence: 99%

Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV

et al. 2021

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“…This will require improved health literacy to ensure appropriate access and decision‐making, especially in light of the projections for cancer mortality and suffering in low‐ and middle‐income countries 3 . Good communication and informed decision‐making are the hallmark of quality, person‐centered care, 41 and the methods to achieve that must be feasible and acceptable for Indian clinical settings. Our data suggest that families should play a central role in information sharing and that patient preference must be established.…”

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confidence: 99%

Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

2021

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Objective Cancer patients in India prefer full information regarding diagnosis and prognosis, but evidence suggests poor insight. This study aimed to identify the role of health literacy among adult patients living with cancer, their families and health professionals in decision‐making and treatment outcomes in India. Methods This cross‐sectional in‐depth study recruited patients, families and clinicians from three centers. Inductive thematic analysis informed a novel conceptual model. Results We recruited n = 34 cancer patients, n = 33 family members, n = 11 doctors and n = 14 nurses (N = 92). Principle emergent themes were the following: (1) Preferences and dynamics of diagnosis and prognosis disclosure, for example, the dominant preference was for families who held hope for cure to discourage disclosure; clinicians sometimes disclosed in line with perceived ability to pay for treatment. (2) Understanding of disease and its treatment options (etiology, potential trajectory, treatment options), for example, lay understandings of cancer etiology as contamination from outside the home, and reluctance of patients to ask questions of clinicians. (3) Priorities in decision‐making, for example, not engaging patients due to fear of patient distress, patients initiated on anticancer treatments without knowledge or consent, pursuing futile treatments. (4) Anxieties over finances and outcomes (disclosure, decision‐making, care pathways), for example, clinicians attempting to reduce families pursuing expensive and inappropriate treatment options with patients who have poor insight, catastrophic spending based on poor decisions. Conclusion The novel evidence‐based health literacy model offers potential for feasible and acceptable intervention to support families in communication, disclosure and decision‐making. This may improve patients' access to informed, appropriate care pathways.

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“…As healthcare is becoming more responsive to patient accounts of their disease [ 34 ], patient reported outcome measures or ‘PROMS’ have become increasingly important in improving care and ensuring equity [ 35 ]. We selected measures with sound psychometric properties that have been previously used in South Africa.…”

Section: Methodsmentioning

confidence: 99%

Symptom prevalence and burden, and the risk of depression among patients with advanced cancer attending two South African oncology units

Farrant¹,

Harding²,

Anderson³

et al. 2022

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Background:The incidence of cancer is predicted to increase globally by 47% between 2020 and 2040, largely in low and middle-income countries. The World Health Organisation and World Health Assembly recognise palliative care as an essential component of cancer care. The evidence of palliative care needs among South African oncology patients is sparse. This study aimed to describe the prevalence and burden of symptoms and the risk of depression amongst oncology patients with stage 3 or 4 cancer.Methods: Demographic and clinical data were collected and the Memorial Symptom Assessment Scale Short Form was used to measure the 7-day period prevalence of 28 physical and 4 psychological symptoms of patients receiving oncology care. The Centre for Epidemiological Studies Depression Scale was used to measure the risk of depression.Results: A total of N = 343 patients were recruited, of which n = 229 (66.8%) had stage 4 cancer. The mean number of symptoms was 11.56 (SD = 5.86). Pain and feeling drowsy/ tired were the two most prevalent symptoms. N = 66 (19.3%) were at risk of mild depression and n = 27 (7.9%) for major depression.Discussion: Pain and depression persist in advanced cancer care despite the advances in policy and clinical education. Health services research must now focus on how to enact this in routine practice.

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The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review

Cited by 61 publications

References 54 publications

Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV

Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV

Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

Symptom prevalence and burden, and the risk of depression among patients with advanced cancer attending two South African oncology units

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