The needs of people living with cancer are not necessarily the same for everyone, nor do they remain unchanged throughout the care pathway. Information, communication with healthcare professionals, psychological support, care and assistance, and material difficulties may take on different levels of importance depending on the stage of illness and individual characteristics.
Two studies by our research group explored these issues using the Needs Evaluation Questionnaire (NEQ), addressing two complementary questions: How do needs vary across different stages of illness? And which patient characteristics are associated with a greater number of unmet needs?
Needs at Different Stages of Illness
The first study analysed questionnaires completed by 752 patients with cancer across six stages of illness and care: diagnosis, treatment, follow-up/rehabilitation, recurrence, disease progression, and the terminal phase/palliative care.
The findings showed that different needs followed different patterns across these stages.
Informational needs were particularly prominent at diagnosis: 73.8% of patients wanted more information about their future condition, and 61.9% wanted further explanations about tests and treatments.
Some needs tended to decrease during subsequent stages, before increasing again in the event of recurrence or progression. During disease progression, for example, 69.6% of patients wanted more information about their future, and 56.8% wanted better dialogue with clinicians.
Other needs followed different patterns: the need to speak with a psychologist was most frequently expressed during follow-up/survivorship, highlighting that the end of treatment does not necessarily mean that the need for psychological support has disappeared.
These findings suggest that needs should not be viewed as static and support the value of repeated assessment throughout the cancer care pathway.
Which Characteristics Are Associated with Greater Needs?
The second study shifted the focus from “when” to “who”, involving 835 patients with cancer from different care settings.
Sociodemographic and clinical characteristics were examined alongside two important psychological dimensions: psychological distress and sense of coherence.
Among the variables examined, care setting, psychological distress, and sense of coherence emerged as the most consistent indicators across the different domains of need.
Distress was strongly associated with unmet needs: patients experiencing greater distress reported more unmet needs across all the domains assessed by the NEQ.
The opposite relationship emerged for sense of coherence, which refers to the tendency to perceive one’s experience as comprehensible, manageable, and meaningful. A stronger sense of coherence was associated with fewer unmet needs.
These associations should not, however, be interpreted as deterministic or causal. They help identify circumstances that warrant particular attention, but they do not allow us to know in advance what an individual person’s needs will be.
The Stage of Illness and the Individual
Taken together, the two studies suggest that needs should be understood through two complementary dimensions.
The first concerns the stage of the cancer care pathway: diagnosis, treatment, follow-up, recurrence, and progression may be associated with different patterns of need.
The second concerns the person experiencing that stage, including their difficulties, psychological resources, individual characteristics, and the setting in which they receive care.
This leads to an important implication for clinical practice: knowing which factors are associated with more unmet needs can help identify situations of particular vulnerability, but it cannot replace direct assessment of the patient’s needs. Moreover, patients should be asked about their needs repeatedly throughout the care pathway, rather than only once. Not Just “What Do You Need?” but “What Do You Need Now?”
Regular needs assessment acknowledges that illness changes, people’s circumstances change, and their priorities may change along with them.
References
Bonacchi A, Di Miceli S, Lippi D, Muraca MG, Miccinesi G. Unmet needs of Italian cancer patients in different stages of the disease and care process. Tumori Journal. 2018;104(4):285–291. doi:10.5301/tj.5000637.
Bonacchi A, Fazzini E, Messina S, Muraca MG, Pacetti P, Di Miceli S, Miccinesi G. Sociodemographic, clinical, and psychological characteristics identify groups of Italian cancer patients with high rates of unmet needs. Tumori Journal. 2019;105(4):288–295. doi:10.1177/0300891618792458.
For further information: andreabonacchi@centrosynthesis.it.
