Cancer patients’ unmet needs in three low- to middle- income countries: Perspectives from Health Care Providers

Abstract

We sought to determine differences by low- and middle- income countries (Brazil, Romania, and Turkiye) on the degree to which health care providers (HCPs) note unmet needs among patients with cancer (N=741). HCPs endorsed sexuality/intimacy and financial concerns as the most common. Investigating age differences in unmet needs between Brazil and Turkiye, were that should be targeted by. Results revealed that unmet needs to manage emotional distress were higher among older patients in Turkiye, whereas unmet needs to manage insomnia/fatigue were higher among pediatric patients in Brazil. Findings may guide the development of programs to address unmet needs among patients.

INTRODUCTION

Unmet needs are frequently reported by patients and caregivers throughout the cancer continuum, particularly among those reporting emotional (e.g., distress, anxiety, and depression), and physical needs (e.g., pain, fatigue, and sleep).^1,2 Growing evidence has suggested that patients’ caregivers also possess unmet needs, most notably with regard to health literacy, including disease, treatment and care-related information.^3,4 In order to address unmet biopsychosocial unmet needs among cancer patients and caregivers and reduce barriers to care, distress screening programs have been developed and implemented into routine oncology care.^5–9

Distress screening programs have been recognized as part of an international standard of comprehensive care, with routinely screening of emotional well-being becoming a specific requirement among accreditation programs.^5–9 The International Psycho-Oncology Society (IPOS), for example, proposed distress as the 6th vital sign, a move that has garnered considerable attention worldwide.¹⁰ These efforts have helped gain insight into the most common unmet needs among people with cancer. More recent efforts have sought to integrate culturally appropriate information and screening, to provide training programs, and to assist in the adaption of existing knowledge and resources to specific cultural or clinical settings.¹⁰ Such efforts have resulted, for example, in the implementation of dedicated psycho-oncology programs in several low- and middle- income countries (LMICs).¹¹

Attention to cultural differences is critical to the development of effective strategies to improve cancer care, especially in LMICs. Notably, most of the knowledge regarding patients’ and caregivers’ unmet needs came from high income countries (HIC), with better healthcare systems, and greater resources to manage unmet needs.¹² Further research is needed to develop effective strategies to identify and target unmet needs globally, including among patients from LMICs.

In the present study, we conducted a subgroup analysis from LMICs investigating differences in how health care providers (HCPs) from different countries characterize existing Psycho-Oncology services and unmet needs among patients. This approach will permit potential differences between countries to emerge and provide further insight into a topic dominated by knowledge derived from HICs. In this paper, LMICs are represented by Brazil, Romania, and Turkiye, each classified as possessing upper middle-income economies. These three countries, with different cultures and languages, have been challenged by a rising number of cancer cases and high rates of cancer-related mortality.¹³ The healthcare system in Brazil and Turkiye consists of both public and private health services.^14–16 In Romania, it is dominated by the public sector.¹⁷ Regarding psychosocial care in oncology, Brazil and Romania are classified at level 3a representing an isolated care service out of IPOS’s six levels,¹⁸ ranging level 1 representing no known psychosocial oncology care to level 6 representing advanced integration into a general range of services.¹⁸ Turkiye is yet to be classified and important efforts are current underway: for example, “Application Procedures and Principles of Palliative Care Services” guideline has been officially introduced in 2020 through which psychologists are integrated as a part of the multidisciplinary health care team. It should be noted that in Turkiye, the palliative care services are predominant care provided to cancer patients.^19,20

To date, few studies examining unmet needs of patients with cancer have been conducted in LMICs. Those that do exist have utilized cross-sectional designs and analyzed data from relatively small cohorts, limiting their generalizability.^21–27 To our knowledge, this is also the first study to survey HCPs and compare data across several LMICs. Thus, this study sought to determine the degree to which HCPs from LMICs assess unmet needs of patients with cancer by country (Brazil, Romania, and Turkiye) and to determine whether differences between Brazil and Turkiye vary as a function of the patients’ age group.

METHODS

We analyzed data from the IPOS Survivorship Online Survey study of HCPs performed across the globe. IPOS member were invited to participate in this survey study and encouraged to distribute the link of the survey among HCP from their country. Importantly, this survey was translated into 15 different languages. The REDCap application was used to facilitate the data collection. For the current study, we analyzed data from three countries classified as LMICs: Brazil, Romania, and Turkiye.

Measures

Unmet Needs.

To measure unmet needs the survey asked the healthcare professionals’ perspective (HCPs) of unmet needs in patients in different age groups (pediatric, adolescent, and young adult, middle-aged adult, older adult). This questionnaire was based on the Needs Assessment of Family Caregivers-Cancer (NAFC-C) and the Needs Assessment of Family Caregivers-Bereaved to Cancer (NAFC-BYC). Both measures demonstrated high psychometric property.²⁸ In addition, the NAFC-C is only measure that showed the validity with longer-term outcomes longitudinally (6-year follow-up, which is 8 years post-diagnosis).²⁹ Participants evaluated the extent to which they perceived the 13 different types of needs being met by their cancer patients/survivors. The types of unmet needs include emotional distress, finding meaning and spiritual concerns, family relationships, sexuality and intimacy, social relationships and isolation, medical care related to cancer, cancer-related symptom management, physical functioning decline, cognitive functioning decline, insomnia/sleep-difficulties and fatigue, financial concern related to cancer care, personal care, and balancing other social roles with new role as either a patient or a family member. The unmet needs domains were developed and validated in the previous study.¹ Participants evaluated their perception of the needs of the patients being met by first indicated whether the need is the same for all age groups of patients/survivors. Then, they were asked to write the degree of the need being met using a scale from 0 (the concern is completely unaddressed; the need is not being met at all) to 100 (the concern is completely addressed; the need is fully being met) per the patients’ age group they were involved. The values of need being met were reversed (100-value) to present higher score for greater unmet needs. Patients’ Age Groups. Cancer patients’ age was grouped in four: pediatric (0–14 or 15 years old), adolescents-and-young adults (AYA; 15 or 16–39 years old), middle-age (40–65 years old), and older adults (older than 66 years old). Participants evaluated the percentage of time of their involvement in different age groups of patients in a typical month (responses for four age groups sum to 100).

Demographic information.

Participants self-reported gender, age, country, discipline, job types, and time of involvement they work with different age groups of patients (Table 1).

Table 1.

Sample Descriptives

	Brazil	Romania	Turkiye
	(n=146)	(n=111)	(n=484)
Job Types
Administration	15.0%	20.4%	15.0%
Clinical Work	41.1%	31.0%	29.2%
Research	14.3%	5.7%	14.6%
Teaching, Supervision, Training	18.4%	8.4%	17.8%
Othera	3.0%	8.3%	9.1%
Duration in the Job (% > 2 years)
Administration	76.7%	70.7%	63.1%
Clinical Work	96.4%	69.8%	67.3%
Research	87.2%	48.5%	64.3%
Teaching, Supervision, Training	79.1%	46.2%	64.2%
Involved Patients
0 – 14 years old	14.1%	4.4%	14.3%
15 – 39 years old	17.7%	13.6%	18.0%
40 – 65 years old	23.2%	21.8%	23.7%
> 66 years old	18.7%	16.1%	22.0%
Age
21–30	13.3%	16.0%	24.3%
31–40	36.7%	36.0%	41.1%
41–50	13.3%	28.0%	29.0%
51–60	20.0%	16.0%	5.6%
61 and above	16.7%	4.0%	0%
Gender
Female	76.7%	24.0%	31.0%
Male	23.3%	68.0%	68.0%
Prefer not to answer	0%	8.0%	1.0%
Disciplines
Counselor/Psychologist	70.0%	20.0%	27.1%
Medical Professional	13.3%	64.0%	43.9%
Other	16.7%	16.0%	29.0%

Note.

^{a =}fundraising, program development, program evaluation, managing website, writing, public relations/engagement/liaison, organizing department meetings.

Statistical Analysis

The frequency and percentage of sample characteristics are reported (Table 1). The percentages of healthcare professionals reported on evaluating the unmet needs (Table 2). The degree to which HCPs evaluated the unmet needs of their patients differs among the three countries was compared using one-way analysis of variance (ANOVA).

Table 2.

Means (SDs) of Unmet Needs by country

	All				0 – 14/15		15/16 – 39		40 – 65		> 66
Unmet Needs Types	BZ	RO	TU	F	BZ	TU	BZ	TU	BZ	TU	BZ	TU	F
Emotional Distress	36.84	46.82	35.29	0.74	60.50	46.25	59.50	41.88b	51.00	48.13	55.00	55.31a	2.38†
	(32.16)	(21.71)	(19.48)		(39.33)	(27.30)	(32.87)	(22.28)	(28.47)	(23.37)	(30.28)	(27.05)
Spiritual Concerns	59.00	71.25	46.88	2.03	77.50	61.22	61.67	46.39	50.83	46.94	54.17	46.11	0.10
	(40.40	(20.31)	(23.64)		(28.64)	(30.07)	(29.50)	(28.38)	(27.78)	(28.76)	(29.99)	(29.93)
Family Relationships	30.00b	60.71a	43.89	3.27*	64.55	56.05	45.91	48.16	52.73	52.89	52.73	56.32	0.77
	(29.58)	(20.50)	(26.67)		(38.24)	(29.84)	(30.73)	(29.78)	(25.33)	(28.84)	(30.69)	(30.36)
Sexuality/intimacy	68.00	75.00	57.86	0.45	72.50	81.84	47.00	58.42	49.00	59.21	62.50	68.95	0.10
	(28.60)	(21.21)	(24.81)		(31.73)	(26.20)	(30.57)	(28.53)	(28.46)	(29.73)	(28.99)	(30.85)
Social Relationships	41.88	65.83	41.15	1.60	62.22	48.25	53.33	42.00	53.33	45.70	55.56	48.55	0.36
	(33.91)	(27.64)	(26.15)		(38.66)	(30.10)	(32.02)	(27.69)	(27.39)	(30.73)	(25.55)	(31.66)
Medical Care	30.83	36.92	39.55	0.48	58.89	39.63	55.56	34.38	55.56	39.69	52.22	44.38	1.46
	(26.25)	(25.38)	(31.43)		(37.57)	(31.02)	(32.45)	(28.98)	(30.46)	(28.31)	(29.91)	(31.62)
Symptom Management	37.00	27.50	34.21	0.45	52.22	41.18	52.22	36.47	51.11	39.41	48.89	45.00	0.88
	(33.73)	(20.38)	(24.28)		(40.24)	(30.80)	(33.08)	(25.97)	(32.19)	(30.31)	(33.33)	(33.45)
Physical Functioning	37.50	36.67	35.00	0.02	70.00a	48.47	61.00b	43.16	56.00b	46.84	58.00	52.47	2.24†
	(30.79)	(23.45)	(27.48)		(32.66)	(28.87)	(26.01)	(28.05)	(25.47)	(31.29)	(30.48)	(32.63)
Cognitive Functioning	73.75a	60.00	39.58b	4.58*	70.00	64.06	60.00	55.44	55.83	54.69	55.83	54.75	0.23
	(24.46)	(18.70)	(27.50)		(33.58)	(34.60)	(31.33)	(31.93)	(26.44)	(34.71)	(27.78)	(36.72)
Insomnia/Fatigue	45.38	27.50	26.33	1.47	68.18a	55.89a	54.55	46.67b	43.64b	55.00a	41.82b	53.89	5.00**
	(34.55)	(21.40)	(27.80)		(34.88)	(32.86)	(30.12)	(30.82)	(27.67)	(29.60)	(29.60)	(30.47)
Financial Concerns	65.50	55.00	54.44	0.32	70.83	65.29	63.33	54.06	52.50	57.53	55.00	57.59	1.34
	(31.49)	(37.05)	(31.77)		(39.19)	(33.61)	(28.39)	(35.60)	(24.17)	(29.08)	(26.11)	(33.82)
Personal Care	34.67	39.17	43.21	0.35	62.50	48.06	45.50	43.11	50.00	45.28	49.50	54.72	1.78
	(30.68)	(17.44)	(27.29)		(40.50)	(34.30)	(31.49)	(29.51)	(29.81)	(29.43)	(31.66)	(32.70)
Balancing Roles	44.62	65.00	35.00	1.38	66.36	57.38	55.91	54.33	57.27	59.52	60.00	60.00	0.72
	(35.27)	(25.50)	(25.33)		(40.56)	(30.36)	(28.00)	(31.85)	(26.87)	(27.52)	(27.57)	(28.59)

^†p < .10,

^*p < .05,

^**p < .01

BZ=Brazil, RO=Romania, TK=Turkiye.

Different subscripts indicate significant differences between or among countries.

Scores for unmet needs ranged from 0 (the concern is completely addressed; the need is fully being met) to 100 (the concern is completely unaddressed; the need is not being met at all).

Then, for those who indicated that the degree of unmet need varies depending on the cancer patients’ age group, two-way interaction effects of countries by patients’ age groups (4). Because HCPs from Romania evaluated all 13 unmet needs being equivalent across patients’ age groups, data from Romania were not included in the two-way interaction effect tests. Significant interactions effects of countries by patients’ age groups were followed up with simple effects tests and Fisher’s Least Significant Difference (LSD) post-hoc tests. Statistical analysis was performed using SPSS version 27 (IBM). Statistical significance was set at a 2-tailed p-value < .05. Missing data were excluded using listwise deletion method per individual analysis.

RESULTS

Sample characteristics

Participants from Brazil, Romania, and Turkiye answered to the IPOS Survivorship Online Survey between February 2018 and February 2019. A total of 741 (n=146, 484, and 111, respectively) participants at least partially completed the parts of the survey for the variables of interest. As shown in Table 1, participants from three countries were primarily involved in clinical work, being on the job for more than 2 years, involved in the work for middle-aged patients, middle-aged, and female. The majority were counselor or psychologists for Brazil, while the majority were medical professions for Turkiye and Romania.

Evaluation of unmet needs of patients among Brazil, Romania, and Turkiye

As shown in Table 2 (“All” columns), HCPs indicated that substantial proportions of patients with cancer are living with high levels of unmet needs for sexuality/intimacy and financial concerns (unmet needs rated as greater than 50%) across three countries.

HCPs of the three countries evaluated the needs for family relationships and cognitive functioning differently. Specifically, the need for family relationships was evaluated to be more likely not being met in Romania than in Brazil, whereas the needs for cognitive functioning was evaluated to be more likely unmet in Brazil than in Turkiye. HCPs evaluated all other needs were likely unmet at a comparable degree across the three countries.

Evaluation of unmet needs of patients by age in Brazil and Turkiye

As shown in Table 2 across the four age groups, the interaction effects of the four age groups by the two countries were significant for insomnia/fatigue, by which HCPs in Brazil evaluated greater unmet needs for insomnia/fatigue among patients who were younger than 39 years old (pediatric and AYA patient groups) as compred to HCPs in Turkiye. In contrast, HCPs in Brazil reported greater unmet needs for insomnia/fatigue for patients who were 40 and older (middle-aged and older adult groups) as compared to HCPs in Turkiye [F_{(3, 24)}=2.33, p = .086]. In addition, two marginally significant interaction effects for emotional distress and physical functioning were found: HCPs in Turkiye tended to evaluate patients who were 66 and older as having greater emotional unmet needs than those who were AYA (15/16–39 years old) [F_{(3, 24)}=2.93, p = .044], a difference not seen among HCPs from Brazil. However, regarding physical functioning, HCPs in Brazil tended to evaluate pediatric patients having the greatest physical functioning unmet needs, a difference was not seen among HCPs in Turkiye. In Brazil, the effects of age were marginally significant for physical functioning and significant for insomnia/fatigue. HCPs rated that pediatric patients as more likely to have unmet needs in physical functioning than AYA and middle-aged patients [F_{(3, 81)}=2.56, p = .076], and greater insomnia/fatigue needs than middle-aged patients and and older adults [F_{(3, 81)}=4.45, p = .011]. The interaction effects in the remaining ten unmet needs were not significant.

Besides interaction effects, results showed that the main effect of age was significant for finding meaning and spiritual concerns [F_{(3, 87)}=9.55, p < .001], family relationships [F_{(3, 87)}=2.74, p = .048], sexuality/intimacy [F_{(3, 84)}=12.31, p < .001], cognitive functioning decline [F_{(3, 81)}=4.78, p = .004], insomnia/ fatigue [F_{(3, 84)}=3.30, p = .024], financial concern [F_{(3, 84)}=3.75, p = .014]. Univariate comparisons revealed that all HCPs rated pediatric patients’ unmet needs for finding meaning and spiritual concerns, and managing cognitive functioning decline, insomnia/ fatigue, and financial concern were significantly greater than those of other age groups. Univariate comparisons also revealed that all HCPs evaluated pediatric patients’ unmet needs for family relationships was significantly greater than those of AYA patients. Regarding unmet needs for sexuality/intimacy, pediatric patients were evaluated to have the greatest unmet needs than patients of older adults, followed by middle-aged and AYA patients.

DISCUSSION

To our knowledge, this is the first study to characterize HCPs’ perceptions of unmet needs among patients with cancer receiving treatment in three LMICs. A substantial proportion of patients report unmet needs during their cancer journey. Specifically, sexual/intimacy and financial concerns were the most frequently unmet needs reported by HCPs across countries. Importantly, these complex unmet needs are commonly reported and may be described as a long-term effect of the cancer journey, underscoring the relevance of identifying and timely targeting these problems.^30,31 Furthermore, in Brazil and in Romania, for example, spiritual concerns, insomnia/fatigue, balancing roles, and social relationship, were highly reported. Suggesting, that social componets of the cancer care experience are highly relevant and should be better identified and addressed. In Turkiye, for example, personal care, social relationship, and medical care were also perceived by HCPs as items that deserve more attention. Notably, this may characterize the challenges faced by this country in changing the way they provide standard of care to their patients.

In addition, our findings have highlighted the importance of targeting family relationships in Romania and cognitive functioning in Brazil. These unmet needs have been frequently reported in the literature, and effective interventions exist to address them.^32–35 It is also important to recognize the influence of culture on the reporting of certain unmet needs and willingness to seek help. Previous studies, for example, have highlighted the fact that patients might prefer to receive some written form of assistance, and that certain topics should be raised by their physician.^34,36

Considering the emotional distress, the means have varied from 35.2 (Turkiye) to 46.2 (Romania), highlighting the need for an effective strategy to implement distress screening programs. In Brazil, for example, previous studies have described the implementation of a screening program and highlighted that HCPs tend to use the Distress Thermometer and the Hospital Anxiety and Depression Scale in their practice.^37,38 In contrast, in Romania the majority of HCP do not use standardized tools for psychosocial assessment and more than one in then professionals do not know how to answer this question. This might suggest that HCPs in Romania do not base psychosocial interventions on any form of validated or comprehensive assessment of unmet needs among patients with cancer.³⁹ Interestingly, the Distress Thermometer has been translated and validated in Brazil, Romania, and Turkiye.^40–43 Further, researchers and clinicians in Turkiye have been advocating for a mandatory distress screening program⁴⁴ and thus further efforts from the international community could support the integration of programs in HCPs to routinely identify and manage unmet needs.

Interestingly, in Turkiye, patients’ age was associated with reporting of emotional distress and insomnia/fatigue. HCPs noted that older patients tended to receive less care for their unmet needs when compared with AYA patients. This highlights the existing challenges and barriers to assessing and treating symptoms among older patients and the potential priority given to screening AYA patients, given their physical functioning, emotional well-being, life circumstances and role demands.^45,46 This trend emphasizes the need for a geriatric assessment program to increase access to targeted treatment.

Intriguingly, in Brazil, age was associated with physical functioning and insomnia/fatigue. Based on our findings, pediatric patients should be classified as a high-risk group in need of psychosocial support. HCPs noted that this group of patients report more unmet needs (spiritual, cognitive, insomnia/fatigue, financial concern) than other age groups, including with regard to family relationships and sexual/intimacy. Standard of care guidelines that encourage routine targeted screening of this group could assist HCPs in meeting pediatric patients’ unmet needs.⁴⁷

The current study represents the first to conduct a comprehensive survey study among HCPs from LMICs. With greater insight into the characteristics, challenges and barriers faced by these HCPs, training programs can be developed and implemented to improve the management of unmet needs among patients with cancer in LMICs. This study has enhanced our knowledge regarding common unmet needs in Brazil, Romania and Turkiye. This study highlights the complexicity of factores associated with the cancer experience and the need for a flexible tailored approach to screening to encompass the needs of patients across the age spectrum. These also enphasize the relevance of taking care of the whole patient, instead of focusing on physical and emotional symptoms. In addition, future efforts must also address the need for increased access to resources and training among LMICs, with an emphasis on integrating psycho-oncology programs into routine cancer care. Such efforts will help LMICs overcome inequities and improve clinical outcomes.

This study is marked by several limitations, including the cross-sectional study design and a high degree of missing data from Romania that prevented from extending the three country comparisons along with patients’ age effect. Second, we did not account for differences in resources available to manage patients’ unmet needs. Third, we did not assess HCP’s confidence levels for managing the unmet needs among their patients, nor examine the degree to which HCPs’ perception aligns with patients. Fourth, further studies are needed to examine the accuracy of HCPs’ evaluation of their patients’ unmet needs. Fifth, investigating the measurement invariance per unmet need item across the three countries and four age groups is warranted in future studies. Finally, generalizability of our findings from Brazil, Romania and Turkiye to all LMICs is limited. These limitations provide fertile ground for future efforts to assess the unmet needs of cancer patients in LMICs.

In summary, the current study provides novel insight into potential unmet needs and barriers for HCPs to provide quality care for their patients with cancer in LMICs. A greater understanding of HCP’s perception can help guide the development of culturally appropriate, effective and validated programs to address unmet needs across the cancer continuum among patients from LMICs.

Data availability statement:

The data that support the findings of the paper are available from the corresponding author upon reasonable request.