Cancer care beyond inpatient treatment
The Needs Evaluation Questionnaire (NEQ) was originally developed by Marcello Tamburini and colleagues at the Istituto Nazionale Tumori in Milan to assess the unmet needs of hospitalised patients with cancer. It is a brief instrument comprising 23 items with dichotomous responses, designed for straightforward use in both clinical practice and research. One of its main strengths is its ease of administration: the questionnaire takes approximately ten minutes to complete and explores several dimensions of the patient experience.
Over the years, however, cancer care has changed considerably. An increasing proportion of care is now delivered without a prolonged hospital stay: day hospital services, outpatient appointments, follow-up programmes, and rehabilitation support patients over periods that may span several years.
This shift raised an important question: could an instrument developed for hospitalised patients also be used with cancer outpatients?
This question was addressed in a study published in Supportive Care in Cancer in 2016 by Bonacchi, Miccinesi, and colleagues. The study had two main objectives: to examine the factor structure of the NEQ in outpatients and to compare unmet needs between inpatients and outpatients.
Why assess needs beyond the inpatient setting?
Being discharged from hospital or attending follow-up appointments does not necessarily mean that a person no longer has needs related to their illness.
Outside the inpatient setting, unmet needs may still concern information and communication with healthcare professionals, care and assistance, psychological and emotional support, relationships, spiritual matters, and practical difficulties in everyday life. Outpatients may also be reluctant to disclose their difficulties spontaneously to healthcare professionals, particularly when these involve psychosocial concerns.
The complexity of cancer care pathways also calls for instruments that can support needs assessment across different care settings. The same patient may move through inpatient treatment, day hospital care, rehabilitation, and follow-up, with needs changing along the way.
The study
The study involved patients from six oncology centres in Tuscany. A total of 783 patients completed the NEQ and were included in the analyses: 195 were inpatients and 588 were outpatients attending day hospital services, follow-up clinics, and rehabilitation services. The sample included people with different cancer sites and at various stages of disease and care. This diversity was particularly valuable because it allowed the NEQ to be examined at different points in the cancer experience.
An initial finding was particularly relevant to the instrument’s usability: outpatients reported no difficulties understanding the questionnaire, and none of the items originally formulated for inpatients was considered inappropriate or unnecessary.
This suggested that the NEQ addressed aspects of the cancer experience that extended beyond hospitalisation alone.
Confirmation of the five main domains of need assessed by the NEQ
A central objective of the study was to determine whether the questionnaire structure previously identified in inpatients also held in outpatients. Confirmatory factor analysis supported a model comprising five correlated domains of need:
- Informational needs;
- Needs related to assistance and care;
- Relational needs;
- Needs for psycho-emotional support;
- Material needs.
The indices reported in the study indicated a good overall model fit.
This was an important finding in the development of the NEQ: the structure of its main domains of need remained identifiable when the instrument was used outside the inpatient setting.
Do needs decrease after hospitalisation? Only partly
The comparison between inpatients and outpatients provided some of the study’s most interesting findings. For 12 of the 23 items, outpatients reported lower rates of unmet needs than inpatients. For the remaining 11 items, there were no significant differences between the two groups. Even where rates were lower among outpatients, they often remained substantial.
For example, among outpatients:
- 48.8% reported needing more information about their future condition;
- 40.9% wanted more information about financial and insurance matters related to their illness;
- 38.7% wanted further explanations about treatment;
- 38.0% expressed a need for better dialogue with clinicians;
- 37.6% wanted to speak with people who had been through the same experience;
- 35.8% wanted better control of symptoms such as pain, nausea, or insomnia.
These findings highlight a key point: leaving the hospital ward does not mean that needs disappear.
Informational needs, needs related to assistance and care, and relational needs were significantly lower among outpatients. By contrast, there were no statistically significant differences between inpatients and outpatients in material needs or needs for psycho-emotional support. These latter two domains may therefore be more closely linked to the experience of cancer itself than to the specific care setting.
The findings on psychological support are particularly noteworthy. Although overall psychological distress was lower among outpatients, their need to speak with a psychologist or a spiritual adviser did not differ significantly from that of inpatients. The authors observed that a desire for support does not necessarily coincide with the presence of distress: even someone who is not experiencing high levels of psychological distress may want an opportunity to process the experience of illness, address the consequences of treatment, or manage the return to work and everyday life. This distinction is clinically relevant: assessing distress and assessing needs are not the same thing.
Addressing needs beyond the original questionnaire: the development of the NEQ-OutP
The study did more than examine whether the original 23 items were suitable for outpatients. The version administered also included an open-ended question, retaining a feature of the first version developed by Tamburini and colleagues: patients could identify any needs not covered by the questionnaire.
Of the 588 outpatients, 123 reported at least one additional need. After excluding needs already represented in the NEQ and applying the criteria used in the instrument’s original development, three specific themes emerged:
- The need for help travelling from home to the oncology centre;
- The need for better communication between the oncologist and the general practitioner;
- The need for help maintaining usual daily activities as much as possible.
Another finding deserves attention. No patient spontaneously reported a sexuality-related need in response to the open-ended question. The authors nevertheless highlighted that the absence of an explicit question could itself contribute to such needs remaining unrecognised and underestimated, particularly in an area that patients may still find difficult to raise spontaneously during clinical consultations.
The study therefore proposed exploring a supplementary module for outpatients comprising four new items: transport to the oncology centre, communication between the oncologist and the general practitioner, maintenance of daily activities, and concerns relating to sexual life.
Combining the original 23-item questionnaire with these four additional items gave rise to the Needs Evaluation Questionnaire for Cancer Outpatients (NEQ-OutP). The effectiveness and psychometric properties of this module and of the full 27-item scale require further psychometric investigation.
From the questionnaire to the care pathway
The significance of the study extends beyond demonstrating that the NEQ can also be administered to outpatients.
Its findings help shift needs assessment from a single, time-limited setting—hospitalisation—to a broader perspective encompassing the care pathway.
Diagnosis, treatment, discharge, rehabilitation, and follow-up each represent different circumstances. Some needs may decrease or change as patients move from one phase to another, while others may persist. New needs may also arise in connection with the return to everyday life, coordination between healthcare services, or the long-term effects of illness and treatment.
Routine assessment of unmet needs should therefore also be introduced in oncology settings beyond inpatient wards, including day hospital services, rehabilitation, and follow-up. Needs assessment should complement biomedical endpoints and quality-of-life measures in the overall evaluation of cancer care.
Patients who are no longer hospitalised may still need information, dialogue, psychological support, practical assistance, or better coordination among the professionals involved in their care. The NEQ offers a simple way to make these needs visible. However, as the original work by Marcello Tamburini and colleagues already emphasised, the purpose of assessment is not simply to count needs: it is to create the conditions for what matters to patients to become part of their care.
Download the questionnaire
Download the Italian version of the 27-item NEQ-OutP for patients receiving cancer care in day hospital, outpatient, follow-up, and rehabilitation settings:
Download NEQ-OutP – Italian version
Download the English version of the 27-item NEQ-OutP for patients receiving cancer care in day hospital, outpatient, follow-up, and rehabilitation settings:
Download NEQ-OutP – English tanslation
Reference
Bonacchi A, Miccinesi G, Galli S, Primi C, Chiesi F, Lippi D, Muraca M, Toccafondi A. Use of the Needs Evaluation Questionnaire with cancer outpatients. Supportive Care in Cancer. 2016. doi:10.1007/s00520-016-3176-4.
Per maggiori info o contatti: andreabonacchi@centrosynthesis.it
