Sociodemographic,clinical,and psychological characteristics identify groups of Italian cancer patients with high rates of unmet needs

Abstract

Purpose:

Although an optimal goal remains the routine assessment of unmet needs of all patients with cancer, particular attention should be paid to those groups of patients with characteristics known to be more frequently associated with unmet needs in general or with specific areas of need. This report aims to describe the sociodemographic, clinical, and psychological characteristics associated with higher unmet needs in Italian cancer patients.

Methods:

A total of 835 cancer patients from different care settings (ward, day hospital, follow-up ambulatory, rehabilitation unit, and palliative care) filled out the Needs Evaluation Questionnaire (NEQ), the Psychological Distress Inventory, and the Sense of Coherence Scale. Association of NEQ scores with the clinical and demographic variables were tested using analysis of variance.

Results:

Higher NEQ total score was associated with lower educational level, inpatient care setting, radiotherapy treatment, psychological distress, and lower resilience trait sense of coherence. Different predictors were identified for different areas of unmet needs. Care setting, psychological distress, and resilience trait were the strongest indicators of unmet needs in every area: information/communication, assistance/care, material needs, relational needs, and psychoemotional support.

Conclusions:

Clinicians should consider that inpatients with a high distress and a low resilience trait sense of coherence represent a group of cancer patients to be investigated with particular attention regarding unmet needs.

Keywords

Unmet needs assessment sense of coherence resilience

Introduction

Cancer patients frequently experience a significant physical and psychological symptom burden with important changes in daily life, which can lead to changes in needs and priorities and the appearance of new needs. Cancer patients’ needs can be categorized in main areas: information and dialogue with physicians,^1–6 material (including need for economic and insurance information and economic support), managing daily life,^7,8 relational,¹ psychosocial support,^3,4,8,9 spiritual issues,¹⁰ and sexual problems.^11,12 When the needs belonging to these areas are perceived by the patient as not adequately met by the care system, they are considered unmet needs. High rates of unmet needs are related with a low quality of life¹³ and with a lower satisfaction of patients with their medical care.¹⁴ Moreover, inadequate attention to the needs of cancer patients and their caregivers can lead to an increase of distress and health care costs.¹⁵

We recently carried out a study in Italian oncology units of the public health care system of Tuscany to investigate unmet needs of cancer patients (assessed by the Needs Evaluation Questionnaire [NEQ]).^16,17 The present report is part of this larger study.

A main finding of this wider survey was the presence, in Italy, of high rates of cancer patients who express unmet needs, especially in the areas of information, relational, and material needs. Moreover, individual unmet needs had significantly different entities at diverse phases of the care process, suggesting the usefulness of periodic and repeated assessments of principal needs and the importance of targeted intervention.¹⁷

To improve health service delivery in oncology, it is crucial to assess unmet needs. In particular, it is important to identify groups of patients with high prevalence of unmet needs on the basis of selected sociodemographic, clinical, and psychological characteristics, in order to concentrate more attention and resources on them. Being younger, single or widowed compared to married, and unemployed are the sociodemographic characteristics more frequently associated with unmet needs.^18,19 As regards sex, some studies reported that women had more needs than men, particularly in the area of psychological and assistance/care needs.^20,21 Clinical characteristics that have been found correlated with unmet needs prevalence include cancer type and status (remission or not) and type of treatment (mainly having received chemotherapy and/or radiotherapy).¹⁹ Data from the literature also suggest that patients with a better quality of life have fewer unmet needs.²² Anxiety, depression, and, in particular, psychological distress have been described as associated with unmet needs in a large number of studies.^19,23,24 On the contrary, social support¹⁹ and resilience²⁵ were associated with lower rates of unmet needs.

The framework of the predictors can be more complex as specific characteristics may predict the needs in some areas and not in other ones.¹⁹

The present report aimed to investigate the association between sociodemographic, biomedical, and psychological characteristics and unmet needs of Italian cancer patients in order to deepen our knowledge of the indicators that could help clinicians in identifying groups of patients with higher rates of unmet needs. In particular, among the psychological aspects potentially associated with unmet needs, we have decided to evaluate the sense of coherence (SOC) since it has been demonstrated that SOC attenuates the impact of negative life events. Individuals with a stronger SOC tend to perceive life happening as less worrying, and are able to identify and activate resources to manage stressful situations.²⁶ In our study, to measure the SOC, we used a short scale proposed by Lundberg and Nystrom Peck (1995) consisting of 3 items (SOC-3) corresponding to the comprehensibility (confidence that the internal and external environments are understandable, consistent, predictable, and explicable), manageability (feeling that personal resources are suitable to meet the demands posed by internal and external stimuli), and meaningfulness (perceiving demands as challenges worthy of time, effort, and engagement) components of sense of coherence.^27,28 Among SOC scales, SOC-3 has been chosen because it is brief and simple to administer in an oncology setting.

Methods

Study sample and data collection

The present sample is part of a wider ongoing survey on unmet needs of cancer patients in Tuscany called “I.B.I.S. (Indagine sui Bisogni Insoddisfatti nella Sanità) Project: Survey on Unmet Health Care Needs in Tuscany.”^16,17,29

The present research involved patients from 7 different oncology medical units in Tuscany, Italy: (1) the Centro Riabilitazione Oncologica (CERION) of the Istituto per lo Studio e la Prevenzione Oncologica (ISPO), Firenze; (2) the Oncologia Medica Aziendale AUSL 10 Firenze; (3) the Oncologia Medica AUSL 4 Prato; (4) the Oncologia Medica AUSL 1 Massa Carrara; (5) the Oncologia Medica, Azienda Ospedaliero Universitaria Careggi-Firenze; (6) the SOD Oncologia Medica 2, DAI Oncologia, Azienda Ospedaliero Universitaria di Careggi-Firenze; and (7) Rete di cure palliative, zona Nord Ovest, USL Centro Firenze, Italy.

During the period of study, participation was proposed to all patients who were consecutively visiting outpatient clinics or had been admitted to oncology wards, or during home palliative care, regardless of site or stage of tumor.

In order to avoid coercion, patients were reassured that participation in the study was entirely free and voluntary and that their nonparticipation would not alter any care received by the clinical staff.

Exclusion criteria were under 18 or over 90 years of age; and cognitive impairment, comorbid psychotic illness, learning disabilities, or severe symptoms due to illness or side effects of therapy that precluded, because of physical limitation, the ability to autonomously complete questionnaires.

Patients participating in the study were asked by the psycho-oncologist or physicians to fill in three questionnaires selected to evaluate resilience, psychological distress, and unmet needs:

The Psychological Distress Inventory (PDI): a test consisting of 13 items, giving a general score of psychological distress in cancer patients; we have used PDI in the present study because it was developed and validated in Italy and it has been previously used in several surveys carried on in the Italian context.³⁰

The SOC-3: items correspond to the three components of the resilience trait SOC: comprehensibility, manageability, and meaningfulness. Answers are indicated in a three-point response format.²⁷ Among scales assessing SOC, we have used the SOC-3 scale because this simplified measure is particularly useful in all settings, such as oncology, in which it is difficult to administer longer versions; moreover, psychometric properties of the Italian version of the SOC-3 scale were recently established.²⁸

The NEQ: a self-administered instrument with 23 dichotomous items that assesses patient needs in five areas: informative needs, needs related to assistance/care, relational needs, needs for psychoemotional support, and material needs.^31,32 The properties of the scale were also analyzed through item response theory analysis: NEQ was metrically invariant across sex, age, and phase of the disease.³³ Among self-report measures of unmet needs, the NEQ has been chosen for the present research because it is a brief and simple to administer scale with well-established psychometric properties especially in the Italian context.

These instruments were administered the second day after admission to the ward or during waiting times at the day hospital or ambulatory or during home palliative care. Clinical data were provided by oncologists. PDI and SOC scales were not distributed in palliative care to avoid an excessive assessment burden.

Statistical analysis

The usual univariate descriptive statistics were performed. NEQ total score was computed summing for each patient the total number of unmet needs divided by the number of NEQ items. Needs area specific scores were computed summing the number of unmet needs in each area divided by the total number of needs considered in that area. One-way analysis of variance and Bonferroni multiple comparisons were used to test the association between unmet needs and the clinical and demographic variables collected, both for NEQ total score and for NEQ specific area scores. The software used was Stata/SE 12.0 (College Station, TX).

Ethics

The study received the approval of the local ethics committees of Careggi Hospital, of AUSL 10 in Florence, of AUSL 4 in Prato, and of AUSL 1 in Massa Carrara. Patients were asked to give written informed consent and received an informative sheet on the study.

Results

A total of 835 patients filled in the NEQ scale and constituted the sample used for the analysis described in the present report; 744 patients filled in both the NEQ and PDI while 762 patients filled in the NEQ and SOC-3. The percentage of patients who accepted the proposal to take part in the research ranged from 71.0% of Centro Riabilitazione Oncologica, Istituto per lo Studio e la Prevenzione Oncologica (rehabilitation unit), up to 95.4% of Oncologia Medica AUSL 4 Prato (oncology ward, day hospital, and ambulatory). Main reasons for refusal to participate in the study were engagement in diagnostic or therapeutic procedures and low interest in the topic of the study.

Basic characteristics of 835 participants are described in Table 1; the same table shows the NEQ total scores of patients in subgroups divided according to demographic, clinical, and psychological characteristics.

Table 1.

Basic sociodemographic, clinical, and psychological characteristics of participants and correlation with Needs Evaluation Questionnaire (NEQ) total score.

	Participants		NEQ total score (SD)	p ^a
	No.	%	NEQ total score (SD)	p ^a
Participants	835		.30 (.24)
Age, y (mean)				.933
18–49	121	14.6	.30 (.24)
50–59	185	22.3	.30 (.24)
60–69	257	31.0	.29 (.24)
⩾70	267	32.2	.30 (.25)
Sex				.159
Female	529	63.6	.31 (.25)
Male	303	36.4	.28 (.24)
Marital status				.227
Single	76	9.2	.33 (.25)
Married/partner	592	71.9	.29 (.24)
Divorced/separated	47	5.7	.35 (.27)
Widowed	108	13.1	.29 (.24)
Educational level				.028
Primary school	258	33.5	.34 (.27)
Secondary school	172	22.4	.30 (.25)
High school	226	29.4	.28 (.24)
University	113	14.7	.27 (.22)
Oncologic care settings				<.001
Ward	202	24.2	.36 (.23)
Day hospital	193	23.1	.27 (.24)
Ambulatory	179	21.4	.29 (.27)
Rehabilitation	216	25.9	.29 (.25)
Palliative care	45	5.4	.18 (.13)
Primary tumor site				.374
Breast	323	40.2	.31 (.26)
Lung	116	14.4	.29 (.22)
Colon–rectum	94	11.7	.26 (.23)
Pancreas	29	3.6	.36 (.32)
Stomach	29	3.6	.28 (.21)
Lymphoma	14	1.7	.30 (.16)
Other	199	24.7	.28 (.25)
Treatment received
Chemotherapy				.390
Yes	532	67.1	.29 (.24)
No	261	32.9	.30 (.26)
Radiotherapy				.010
Yes	294	37.2	.26 (.24)
No	497	62.8	.31 (.24)
PDI score^b				<.001
⩽29	447	60.1	.22 (.23)
>30	297	39.9	.42 (.24)
SOC^b				<.001
⩽4	542	71.1	.33 (.26)
5–6	220	28.9	.23 (.22)

Probability > F in analysis of variance.

N is 790 because Psychological Distress Inventory (PDI) and sense of coherence (SOC) scales were not filled in palliative care.

Patients were likely to report more unmet needs if they had lower educational level (Bonferroni multiple comparisons: high school vs primary school p = .047), if they were hospitalized (Bonferroni for inpatients vs other care setting: day hospital p = .002, ambulatory p = .058, rehabilitation unit p = .011, home palliative care p < .001), and if they received radiotherapy (F test p = .010). Moreover, patients with higher distress levels as measured by PDI (F test p < .001) and with lower levels of resilience trait as measured by SOC (F test p < .001) had higher rates of unmet needs.

Previous studies have shown, via factor analysis, the existence of five major areas in which the NEQ items are distributed^16,32: information needs, needs related to assistance/care, relational needs, psychoemotional needs, and material needs. Therefore we repeated the analysis presented in Table 1 for specific need areas (Table 2).

Table 2.

Sum of Needs Evaluation Questionnaire (NEQ) affirmative answer for each area divided by the number of items in each area, by sociodemographic, clinical, and psychological characteristics (SD).

	Informative needs	p ^a	Needs related to assistance	p ^a	Material needs	p ^a	Relational needs	p ^a	Needs for psycho-emotional support	p ^a
Participants	.38 (.35)		.14 (.25)		.28 (.31)		.26 (.32)		.26 (.30)
Age, y (mean)		.827		.343		.008		.867		.003
18–49	.36 (.35)		.13 (.26)		.32 (.33)		.26 (.31)		.32 (.32)
50–59	.37 (.34)		.12 (.23)		.33 (.31)		.25 (.32)		.29 (.31)
60–69	.38 (.35)		.13 (.24)		.25 (.30)		.26 (.31)		.25 (.30)
⩾70	.39 (.37)		.16 (.26)		.26 (.30)		.28 (.32)		.21 (.28)
Sex		.808		.599		.027		.335		<.001
Female	.38 (.35)		.14 (.25)		.30 (.31)		.27 (.32)		.29 (.32)
Male	.37 (.35)		.13 (.24)		.25 (.31)		.25 (.30)		.20 (.26)
Marital status		.621		.795		.107		.185		.004
Single	.39 (.33)		.16 (.25)		.30 (.34)		.33 (.32)		.37 (.35)
Married	.37 (.36)		.13 (.25)		.27 (.30)		.25 (.31)		.24 (.29)
Divorced	.44 (.36)		.14 (.28)		.38 (.34)		.28 (.31)		.31 (.33)
Widowed	.37 (.35)		.12 (.24)		.27 (.30)		.29 (.32)		.23 (.29)
Educational level		.145		.002		.569		<.001		.648
Primary school	.42 (.38)		.18 (.28)		.31 (.32)		.32 (.34)		.25 (.29)
Secondary school	.39 (.35)		.11 (.22)		.28 (.33)		.26 (.32)		.26 (.30)
High school	.37 (.35)		.10 (.23)		.27 (.30)		.21 (.30)		.25 (.31)
University	.33 (.31)		.11 (.20)		.27 (.28)		.23 (.29)		.29 (.32)
Oncology care settings		<.001		.004		<.001		.094		<.001
Ward	.48 (.36)		.19 (.29)		.29 (.30)		.31 (.31)		.31 (.31)
Day hospital	.35 (.35)		.11 (.22)		.24 (.39)		.26 (.32)		.21 (.26)
Ambulatory	.37 (.36)		.13 (.25)		.30 (.31)		.24 (.33)		.25 (.31)
Rehabilitation	.34 (.34)		.11 (.22)		.33 (.32)		.23 (.32)		.29 (.33)
Palliative care	.23 (.22)		.11 (.22)		.04 (.10)		.28 (.24)		.06 (.15)
Primary tumor site		.680		.849		<.001		.370		<.001
Breast	.37 (.35)		.14 (.25)		.33 (.32)		.27 (.33)		.32 (.33)
Lung	.40 (.35)		.12 (.23)		.21 (.25)		.27 (.29)		.21 (.27)
Colon–rectum	.36 (.35)		.15 (.27)		.21 (.28)		.20 (.28)		.19 (.26)
Pancreas	.46 (.35)		.15 (.21)		.33 (.29)		.32 (.29)		.32 (.31)
Stomach	.42 (.36)		.08 (.17)		.14 (.21)		.27 (.31)		.15 (.19)
Lymphoma	.33 (.37)		.17 (.25)		.31 (.30)		.4 (.29)		.26 (.27)
Other	.36 (.35)		.14 (.26)		.26 (.32)		.24 (.31)		.21 (.27)
Chemotherapy		.313		.315		.431		.887		.920
Yes	.36 (.34)		.13 (.24)		.27 (.30)		.26 (.31)		.25 (.30)
No	.39 (.36)		.15 (.27)		.29 (.31)		.26 (.31)		.26 (.31)
Radiotherapy		.004		.002		.763		.100		.798
Yes	.32 (.34)		.10 (.21)		.27 (.31)		.24 (.30)		.25 (.31)
No	.40 (.35)		.16 (.27)		.28 (.30)		.27 (.32)		.26 (.30)
PDI score	.29 (.33)	<.001		<.001		<.001		<.001		<.001
⩽29	.53 (.35)		.09 (.21)		.23 (.28)		.18 (.2)		.19 (.24)
>30			.20 (.29)		.29 (.33)		.37 (.22)		.27 (.34)
SOC score		<.001		.004		<.001		<.001		.008
⩽4	.42 (.36)		.15 (.26)		.32 (.32)		.29 (.33)		.28 (.32)
5–6	.30 (.33)		.10 (.21)		.22 (.28)		.17 (.28)		.22 (.26)

PDI: Psychological Distress Inventory; SOC: sense of coherence.

Probability > F in analysis of variance.

Informative needs were more often unmet among inpatients than among patients taken care of in other care settings (p < .05 for all Bonferroni multiple tests), among patients who did not receive radiotherapy (F test p = .004), and among patients with higher distress (F test p < .001) or lower resilience (F test p < .001).

Needs related to assistance were more often unmet among patients with the lowest level of education (p < .05 for Bonferroni multiple tests comparing primary school vs medium and high school) among inpatients (p < .05 for Bonferroni multiple tests comparing inpatient vs day hospital and rehabilitation patients), and again among patients who did not receive radiotherapy (F test p = .002) and among patients with higher distress (F test p < .001) or lower resilience (F test p = .004).

Material needs were more often unmet among younger patients (Bonferroni multiple test p = .025 comparing 50–59 vs 60–69 years old), female patients (F test p = .027), lower among patients in home palliative care (p < .001 for Bonferroni multiple tests comparing palliative care patients vs all the other settings), higher among breast cancer patients than among lung, colon–rectum, and stomach cancer patients (Bonferroni multiple test p = .007, p = .017, and p = .026, respectively), and among patients with higher distress (F test p < .001) or lower resilience (F test p < .001).

Relational needs were more often unmet among patients with primary school only than among high school patients (Bonferroni p < .001), and again among patients with higher distress (F test p < .001) or lower resilience (F test p < .001).

Needs for psycho-emotional support were less often unmet among patients older than 70 years than among patients younger than 50 years (Bonferroni p = .004), and among male than among female patients (F test p < .001), more often among single patients than among married/living with partner or widowed people (Bonferroni p = .005 and p = .012, respectively), much less often among people in home palliative care (Bonferroni test p < .001 for comparison between palliative care and ward/ambulatory/rehabilitation; p = .023 for comparison with day hospital), more often among breast cancer patients than among patients with lung or colon cancer (Bonferroni p = .022 and p = .009, respectively), and again among patients with higher distress (F test p < .001) or lower resilience (F test p = .008).

Discussion

An open challenge in the oncology and psycho-oncology field is the introduction into clinical practice of a systematic assessment of unmet needs of cancer patients. Although an optimal goal remains the routine assessment of unmet needs in all patients with cancer,³⁴ particular attention should be paid to those groups of patients with sociodemographic, biomedical, and psychological characteristics that we know are more frequently associated with unmet needs in general or with specific areas of need.

Using NEQ in our survey, we found that the total score was associated, among sociodemographic and clinical characteristics, with lower educational level, with care setting, and with radiotherapy treatment. Patients with higher educational level compared with those with lower educational level probably have cultural and material resources that allow them to find more effective satisfaction of their needs. As theoretically expected and confirmed by previous studies,¹⁶ patients who refer to different oncology care setting have diverse kinds and extent of unmet needs. This is due not only to clinical and relational specificity of each care setting but also to the fact that often different care settings correspond to different stages of the disease and care process. The association between radiotherapy and lower levels of NEQ total score could be explained by the fact that patients who undergo this kind of treatment meet another physician, the radiation therapist, in addition to the oncologist and therefore have more opportunities to express their unmet needs, particularly informative and assistance/care needs, and to receive help with them.

In our survey, being younger, female, single, or divorced was associated with higher rates of unmet needs related to psycho-emotional support. The same is true for material needs except for civil status. The finding concerning age as a predictor of unmet needs was coherent with previous reports^14,18 and has been explained arguing that older people have lower expectation of the health system and life in general.¹⁸ Moreover, low levels of spontaneous communication of unmet needs have been explained in older adult patients with the fact that they have grown up in a period characterized by a “physician-centred” clinical practice and a rare spontaneous disclosure of concerns.³⁵ As regards sex, also in other studies women have been reported as having more needs than men, especially in the psycho-emotional area.^18,21,36 Men may have greater difficulty showing vulnerability revealed by the expression of their unmet needs and requesting help. Married or widowed patients have less psycho-emotional support needs than single or divorced patients and this is in line with the literature that highlights that cancer patients’ concerns are more met if an informal caregiver is present¹⁹; caregivers provide cancer patients with emotional, practical, and economic support, with an effect of reduction of psychological distress and improved quality of life.

Among clinical characteristics, diverse oncology care settings were associated with different rates of unmet needs in all areas except for relational needs (e.g. “I need to be more reassured by my relatives”; “I need to feel less abandoned to myself”; “I need to feel more useful in my family”). In fact, the relational needs remained high even in outpatient services (day hospital, follow-up ambulatory, rehabilitation unit) and palliative care while, for the other areas of concerns, in these care settings fewer unmet needs were usually observed.

In our study, breast cancer patients had higher reported level of unmet material and psycho-emotional needs. This finding could be partially explained by the fact that breast cancer patients were women,^18,21 but a multiple regression model adjusted for sex still showed a significantly higher level of these unmet needs among breast cancer patients (data not shown).

Patients’ psychological characteristics were the strongest indicators of unmet needs. Psychological distress was positively associated with NEQ total score and distressed patients had higher levels of unmet needs in all specific need areas. These data, along with other similar data emerging from the literature,^19,23,24 lead us to emphasize the importance of systematic and routine assessment of psychological distress among patients with cancer; such screening of distress would allow not only early and adequate treatment of psychological symptoms but also the recognition of a group of patients with a greater number of unmet needs to be further evaluated by clinical interview or specific scales for the assessment of unmet needs. The direction of the possible causal relationship between distress and unmet needs cannot be found by a cross-sectional study and needs further research.

Furthermore, Dubey et al.²⁵ had found that resilience of cancer patients, assessed by the Connor Davidson Resilience Scale, was associated with lower rates of unmet needs. Psychological resilience, as an individual ability to successfully adapt to life tasks in adverse conditions (such as cancer illness), depends on different personality traits. In the present study, we focused on the resilience trait SOC,^29,37 which we knew was able to influence health.^38,39 This construct is a global orientation to view the world and the individual environment as comprehensive, manageable, and meaningful. In our study, SOC was inversely correlated with the presence of unmet needs (NEQ total). This suggests that a higher resilience capacity helps people to find satisfaction for their own needs. This is the first description of the correlation between a specific resilience aspect (i.e. SOC) and the unmet needs of cancer patients. The evaluation of SOC (using the SOC-3 scale) could be included in the basic psychological assessment of cancer patients; in fact, patients with low levels of SOC and high distress represent a group in which to investigate with particular attention unmet needs using clinical interview or specific questionnaires. Moreover, developing supportive interventions that include aspects aimed at reinforcing the SOC could lead to greater capacity of patients to find satisfaction with their unmet needs with expected positive effects on reduction of psychological distress and improvement in quality of life.

The present study has some limits: first, we did not investigate patients from surgical settings; second, all the data came from cancer centres in the same region (Tuscany). Generalizability to patients in the rest of Italy or in other countries should be explored in future studies.

Conclusions

This study gives a contribution highlighting, in an Italian sample of cancer patients, the sociodemographic, biomedical, and psychological characteristics that identify groups of cancer patients with higher rates of unmet needs. Care setting, high psychological distress, and low resilient trait SOC were the strongest indicators of unmet needs in all areas: information/communication, assistance/care, material needs, relational needs, and psycho-emotional support. Clinicians should consider that inpatients with high distress and low SOC represent a group of cancer patients to investigate with particular attention to unmet needs.

Footnotes

Acknowledgements

The authors thank the doctors and nurses of the oncology units involved in the study and volunteers of the Psychosynthesis Center of Firenze for their support of the research.

Declaration of conflicting interest

The authors declare that there is no conflict of interest.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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