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(PHILADELPHIA) – Despite a concerted effort by local and regional medical groups and health care agencies over the past twenty years, Pennsylvanians with cancer are not having their basic needs for psychosocial support met. In a report appearing online in CANCER, researchers at the University of Pennsylvania School of Medicine found that support for psychosocial needs, such as activities of daily living (feeding, dressing, housework), transportation, financial issues (paying for prescriptions), and emotional issues have not improved. The study also states that some needs, such as insurance, employment, access to medical information, and homecare have worsened.

“During the past 20 years in Pennsylvania and across the country, there has been a tremendous effort to address the physical and psychosocial needs of cancer survivors through the creation support groups, financial assistance programs, and even resources to help people obtain wigs and cosmetics. However, people are still not receiving these important services that make a positive impact on their quality of life and ability to fully recover,” says Frances K. Barg, PhD, MEd, Assistant Professor, Department of Family Medicine and Community Health at Penn.

The study, funded by the Pennsylvania Department of Health, used the Pennsylvania Cancer Registry to identify individuals diagnosed with cancer. The researchers conducted interviews with 32 cancer survivors or family members to identify the psychosocial needs of people from the time of cancer diagnosis through survivorship. This information was then used to modify a needs assessment survey that was used in a similar study in 1986. The needs assessment was mailed to 2,585 potential participants identified from the Cancer Registry, and a total of 614 cancer survivors provided responses.

The researchers found that nearly two-thirds of the respondents reported experiencing at least one unmet psychosocial need, particularly emotional (feeling very nervous, afraid, tense, down or depressed), physical (fatigue, nausea or vomiting, pain), and treatment-related needs. Based on this, the researchers estimated that in the current year, 49,554 people with cancer in Pennsylvania will experience at least one unmet psychosocial need.

Particular subgroups of people were also found to be more at-risk for not getting their needs met. The researchers found that responders who were young and had other illnesses reported the most unmet needs. “This may be due to the fact that their resources and support systems may already be stretched to the max in dealing with these problems,” says Barg. “Furthermore, cancer in younger people is incredibly disruptive in terms of role function. It is hard enough to cope with cancer and cancer treatment, but when you couple this with disruptions in work, parenting, and schooling, it is very difficult.” Greater unmet need was also associated with lower income, being female, and being single.

In comparison with the 1986 study, the researchers found that the pattern of unmet needs remained substantially unchanged and in fact increased in the areas of insurance, employment, obtaining information about illness or treatment, and homecare.

“Many of the resources that are available are concentrated in the specialty care setting. However, once a person’s cancer treatment is complete, they often go back to receiving their care in a primary care setting where psychosocial resources may not be as prominent or readily available to the patient,” says Barg. “Since psychosocial issues are very common among cancer patients, we need to take a broader public health approach that involves specialty and primary care practitioners to ensure that patients’ needs are met from diagnosis, through treatment, and after.”

Additional researchers involved in the study are Peter F. Cronholm, MD, MSCE, Joseph B. Straton, MD, MSCE, and Shimrit Keddem, BA, Department of Family Medicine and Community Health, Penn; Kathryn Knott, MS, RN, Department of Psychiatry, Penn; Steven C. Palmer, PhD, Abramson Cancer Center and Department of Psychiatry, Penn; Joyce Grater, PhD, University of Pittsburgh Medical Center; Peter Houts, PhD, Pennsylvania State University College of Medicine.

This study was funded by a grant from the Pennsylvania Department of Health, Division of Cancer Prevention and Control.

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